Re: [CMLHope] Digest for cmlhope@googlegroups.com - 7 updates in 2 topics Joyce

['Icandoallttc' via CMLHope]

Hi Joyce I am 81 so got one year over your hubby.  

> On Sep 23, 2019, at 1:03 AM, Joyce Mesnarich  wrote:
> 
> Norm,
> Wow!  You have had quite the active life.  Old age is not for the meek, I 
> have found that out.  I love your light-hearted view of your miseries.  My 
> husband is the CML patient.  He has had it for 11 years.  Tried Gleevec but 
> was allergic to it.  Then on Sprycel for about 5 years.  It caused him to 
> have plural effusion, fluid around the heart.  He was taken off that and now 
> is on Bosulif.  He doesn’t seem to have any major side effects but his skin 
> is full of blemishes.  He can live with that.  He has no energy.  Don’t know 
> if that is due to CML, the TKIs or old age (he is 80).  Hope you continue to 
> improve and stay away from that Aleve.
>   Joyce in Southern Illinois
> 
> 
>> On Sep 17, 2019, at 7:50 AM, N Quade  wrote:
>> 
>> I am still here and hanging in.
>> No longer on Tasigna and now on Sprycel.
>> The Monday after Thanksgiving I had a quadruple bypass and my doctor said 
>> that the Tasigna could be a contributing factor in my heart issues. I have a 
>> history of heart disease in my family so I take that with a grain of salt. 
>> Well, no salt anymore.
>> I was home for about five days and had to get 911 to send an ambulance 
>> because I was passing blood and almost pulled an Elvis in the bathroom.
>> Had to get 7 units of blood and three bleeding ulcers ffixed. Seems taking 
>> Aleve for joint pain over a long period will eat hole in your stomach.
>> The best news is I was able to walk my daughter down the aisle for her 
>> wedding this past March.
>>  
>> My wet macular degeneration is mostly stable but did have issues with both 
>> eyes and am getting shots in them. No more leaks as of now but have to “see” 
>> the retina doctor about every 8 weeks now.
>>  
>> I set my retirement date and am looking forward to the end of the year and 
>> starting the next chapter in my life.
>> My spouse had her job outsourced to India so she beat me to retirement.
>>  
>> We still have our rescue wiener dog and he is a hoot. I do think he is a bit 
>> confused with my wife not working and is missing out on his normal 22 hours 
>> of sleep.
>>  
>> I just got my latest numbers from my last visit to MD Anderson and have not 
>> looked yet. They had me on the smallest Sprycel dose and my number started 
>> rising so he upped it to 50mg and I go in every three months now. I am going 
>> on 17 years as a survivor and 15 years since I was declared in blast .
>>  
>> All in all, life is good. I have determined that aging is not for sissies. I 
>> am still struggling to understand why when I wake up and something hurts for 
>> no reason. Why is it that it takes a bit for my legs to understand their 
>> function when I stand up and tell them to walk. I do have some ideas about 
>> being safer such as wearing a helmet so I don’t bust my head if I were to 
>> fall. Now if I could just figure out how to make a functioning roll cage to 
>> keep me from hurting myself should my legs fail to respond in a timely 
>> manner. I am not sure how long my cat like reflexes will keep me from harms 
>> way.
>>  
>> I will check in more often.
>>  
>> Norm
>>  
>> Sent from Mail for Windows 10
>>  
>> From: cmlhope@googlegroups.com 
>> Sent: Tuesday, September 17, 2019 5:10:01 AM
>> To: Digest recipients 
>> Subject: [CMLHope] Digest for cmlhope@googlegroups.com - 7 updates in 2 
>> topics
>>  
>> cmlhope@googlegroups.com Google Groups   
>> Topic digest 
>> View all topics
>> Not getting any mail - 6 Updates
>> Is this correct - 1 Update
>> Not getting any mail 
>> icandoallttc : Sep 16 11:52AM -0400 
>> 
>> Hello
>> I am not receiving any mail from group. Has this group shut down. 
>> Anyway Igor a letter in the mail saying AcariaHealth would handle my 
>> Ponatinib from now on. I never heard from them and think it’s fraud. Anyone 
>> else heard this. Hope everyone is great. 
>>  
>> My Motto:
>> Faith and Pills
>> With Love
>> Jeanie
>> free
>> Christian 
>> Dx 1/2004 CML Leukemia
>> Started Gleevec 2/2004
>> Started Tasigna 9/2009
>> Started Sprycel 11/2009
>> Started Ponatinib 1/ 2015 15 mg
>> New Doctor--Dr Martine Extermann
>> Moffitt Cancer center sept 2017
>> Dr Balducci retired 
>> Dr Gedia PCD
>> 0 CBL. ABL
>> July 2018 dx with thyroid disease tsh 13
>> T4-normal t3-normal
>> bkbar...@aol.com: Sep 16 04:0

Re: [CMLHope] Digest for cmlhope@googlegroups.com - 7 updates in 2 topics hi all

['Icandoallttc' via CMLHope]

em and think it’s fraud. Anyone 
>> else heard this. Hope everyone is great. 
>>  
>> My Motto:
>> Faith and Pills
>> With Love
>> Jeanie
>> free
>> Christian 
>> Dx 1/2004 CML Leukemia
>> Started Gleevec 2/2004
>> Started Tasigna 9/2009
>> Started Sprycel 11/2009
>> Started Ponatinib 1/ 2015 15 mg
>> New Doctor--Dr Martine Extermann
>> Moffitt Cancer center sept 2017
>> Dr Balducci retired 
>> Dr Gedia PCD
>> 0 CBL. ABL
>> July 2018 dx with thyroid disease tsh 13
>> T4-normal t3-normal
>> bkbar...@aol.com: Sep 16 04:06PM 
>> 
>> HI Jeannie. I have not heard from anyone in a long while. This is Beth. Hope 
>> everyone out there is hanging in there.. My best to all of you..
>>  
>> KIndest regards, 18's for Marty and hugs to all..
>> Beth
>>  
>>  
>> -Original Message-
>> From: 'icandoallttc' via CMLHope 
>> To: cmlhope 
>> Sent: Mon, Sep 16, 2019 10:52 am
>> Subject: [CMLHope] Not getting any mail
>>  
>> HelloI am not receiving any mail from group. Has this group shut down.  
>> Anyway Igor a letter in the mail saying AcariaHealth would handle my 
>> Ponatinib from now on. I never heard from them and think it’s fraud. Anyone 
>> else heard this. Hope everyone is great.  
>> My Motto:Faith and PillsWith LoveJeaniefreeChristian Dx 1/2004 CML 
>> LeukemiaStarted Gleevec 2/2004Started Tasigna 9/2009Started Sprycel 
>> 11/2009Started Ponatinib 1/ 2015 15 mgNew Doctor--Dr Martine 
>> ExtermannMoffitt Cancer  center sept 2017Dr Balducci retired Dr Gedia PCD0 
>> CBL. ABLJuly 2018 dx with thyroid disease tsh 13T4-normal t3-normal-- 
>> -- 
>> [CMLHope]
>> A support group of http://cmlhope.com
>> -
>>  
>> You received this message because you are subscribed to the Google Groups 
>> "CMLHope" group.
>> To post to this group, send email to CMLHope@googlegroups.com
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>> For more options, visit this group at http://groups.google.com/group/CMLHope
>> --- 
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>> Joyce Mesnarich : Sep 16 02:08PM -0500 
>> 
>> Hi Jeanie.
>> I think we all have just become quiet on this site. I have received no mail 
>> either. My husband is the CML patient. I am his caregiver. He is presently 
>> taking Bosulif. I don’t know anything about Ponatinib, so I can’t help you. 
>> But I, too, would be skeptical of getting meds from a place I didn’t know 
>> anything about. 
>> My husband was previously seeing Dr Talpaz in Michigan. We live in Southern 
>> Illinois. So it was an expensive trip and as we have gotten older we found 
>> it is just too much for us. We found a doctor at Siteman Cancer Center in St 
>> Louis (50 miles from us) and started going to him. He is elderly himself. 
>> The last 2 times we went we saw his PA. She seems good but certainly is not 
>> up to Dr Talpaz standards. We fear that his new doctor may be slipping a bit 
>> and they are keeping him from seeing patients. My husband is doing well as 
>> far as CML goes. But time is taking its toll. He has very low energy. Don’t 
>> know if that is the CML or the medication. 
>> I hope you are feeling well. I know you have had some problems in the past. 
>> I have been in this group since 2008. Seems most everybody is gone. Sad.
>> Joyce in Southern Illinois
>>  
>>  
>> myvet...@aol.com: Sep 16 08:51PM 
>> 
>> That's funny that you put out a post, I was going send one also like (hello, 
>> is anyone out there).  I don't have to now. Thanks for posting.
>> greenie
>>  
>> -Original Message-
>> From: Joyce Mesnarich 
>> To: cmlhope 
>> Sent: Mon, Sep 16, 2019 3:08 pm
>> Subject: Re: [CMLHope] Not getting any mail
>>  
>> Hi Jeanie.I think we all have just become quiet on this site.  I have 
>> received no mail either.  My husband is the CML patient.  I am his 
>> caregiver.  He is presently taking Bosulif.  I don’t know anything about 
>> Ponatinib, so I can’t help you.  But I, too, would be skeptical of getting 
>> meds from a place I didn’t know anything about.  My 

[CMLHope] Acaria health

['icandoallttc' via CMLHope]

Hello everyone
I had the strangest thing happen to me in reference to my Ponatinib. Is anyone 
on Ponatinib ?
I got a letter telling me ascaria health would be handling my drug from now on. 
I did t ask for this so decided to wait until biologics called to refill my 
prescription. Well they called and asked me if I was ready for refill. Never 
mentioned as aria and my medicine came As usual. I was so happy. So my question 
is should I notify someone of this as it seems like a fraud to me. This 
medicine is very expenvive. It is 17,000 $ a month.  Has anyone ever have this 
happened?  I’ve researched google with no answers. 
 Norm I remember when you helped me run the tasigna group.   I couldn’t take 
it. Talk later all the news. You and your wife love are so up lifting. Yes love 
you so very much. 


My Motto:
Faith and Pills
With Love
Jeanie
free
Christian 
Dx 1/2004 CML Leukemia

-- 
-- 
[CMLHope]
A support group of http://cmlhope.com
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Re: [CMLHope] Digest for cmlhope@googlegroups.com - 7 updates in 2 topics

['icandoallttc' via CMLHope]

 9/2009
>> Started Sprycel 11/2009
>> Started Ponatinib 1/ 2015 15 mg
>> New Doctor--Dr Martine Extermann
>> Moffitt Cancer center sept 2017
>> Dr Balducci retired 
>> Dr Gedia PCD
>> 0 CBL. ABL
>> July 2018 dx with thyroid disease tsh 13
>> T4-normal t3-normal
>> bkbar...@aol.com: Sep 16 04:06PM 
>> 
>> HI Jeannie. I have not heard from anyone in a long while. This is Beth. Hope 
>> everyone out there is hanging in there.. My best to all of you..
>>  
>> KIndest regards, 18's for Marty and hugs to all..
>> Beth
>>  
>>  
>> -Original Message-
>> From: 'icandoallttc' via CMLHope 
>> To: cmlhope 
>> Sent: Mon, Sep 16, 2019 10:52 am
>> Subject: [CMLHope] Not getting any mail
>>  
>> HelloI am not receiving any mail from group. Has this group shut down.  
>> Anyway Igor a letter in the mail saying AcariaHealth would handle my 
>> Ponatinib from now on. I never heard from them and think it’s fraud. Anyone 
>> else heard this. Hope everyone is great.  
>> My Motto:Faith and PillsWith LoveJeaniefreeChristian Dx 1/2004 CML 
>> LeukemiaStarted Gleevec 2/2004Started Tasigna 9/2009Started Sprycel 
>> 11/2009Started Ponatinib 1/ 2015 15 mgNew Doctor--Dr Martine 
>> ExtermannMoffitt Cancer  center sept 2017Dr Balducci retired Dr Gedia PCD0 
>> CBL. ABLJuly 2018 dx with thyroid disease tsh 13T4-normal t3-normal-- 
>> -- 
>> [CMLHope]
>> A support group of http://cmlhope.com
>> -
>>  
>> You received this message because you are subscribed to the Google Groups 
>> "CMLHope" group.
>> To post to this group, send email to CMLHope@googlegroups.com
>> To unsubscribe from this group, send email to 
>> cmlhope-unsubscr...@googlegroups.com
>> For more options, visit this group at http://groups.google.com/group/CMLHope
>> --- 
>> You received this message because you are subscribed to the Google Groups 
>> "CMLHope" group.
>> To unsubscribe from this group and stop receiving emails from it, send an 
>> email to cmlhope+unsubscr...@googlegroups.com.
>> To view this discussion on the web visit 
>> https://groups.google.com/d/msgid/cmlhope/7D3D7A1F-0B96-4EE1-A9D0-A1679422842F%40aol.com.
>> Joyce Mesnarich : Sep 16 02:08PM -0500 
>> 
>> Hi Jeanie.
>> I think we all have just become quiet on this site. I have received no mail 
>> either. My husband is the CML patient. I am his caregiver. He is presently 
>> taking Bosulif. I don’t know anything about Ponatinib, so I can’t help you. 
>> But I, too, would be skeptical of getting meds from a place I didn’t know 
>> anything about. 
>> My husband was previously seeing Dr Talpaz in Michigan. We live in Southern 
>> Illinois. So it was an expensive trip and as we have gotten older we found 
>> it is just too much for us. We found a doctor at Siteman Cancer Center in St 
>> Louis (50 miles from us) and started going to him. He is elderly himself. 
>> The last 2 times we went we saw his PA. She seems good but certainly is not 
>> up to Dr Talpaz standards. We fear that his new doctor may be slipping a bit 
>> and they are keeping him from seeing patients. My husband is doing well as 
>> far as CML goes. But time is taking its toll. He has very low energy. Don’t 
>> know if that is the CML or the medication. 
>> I hope you are feeling well. I know you have had some problems in the past. 
>> I have been in this group since 2008. Seems most everybody is gone. Sad.
>> Joyce in Southern Illinois
>>  
>>  
>> myvet...@aol.com: Sep 16 08:51PM 
>> 
>> That's funny that you put out a post, I was going send one also like (hello, 
>> is anyone out there).  I don't have to now. Thanks for posting.
>> greenie
>>  
>> -Original Message-
>> From: Joyce Mesnarich 
>> To: cmlhope 
>> Sent: Mon, Sep 16, 2019 3:08 pm
>> Subject: Re: [CMLHope] Not getting any mail
>>  
>> Hi Jeanie.I think we all have just become quiet on this site.  I have 
>> received no mail either.  My husband is the CML patient.  I am his 
>> caregiver.  He is presently taking Bosulif.  I don’t know anything about 
>> Ponatinib, so I can’t help you.  But I, too, would be skeptical of getting 
>> meds from a place I didn’t know anything about.  My husband was previously 
>> seeing Dr Talpaz in Michigan.  We live in Southern Illinois.  So it was an 
>> expensive trip and as we have gotten older we found it is just too much for 
>> us.  We found a doctor at Siteman Cancer Center in St Louis  (50 miles from 
>

Re: [CMLHope] Digest for cmlhope@googlegroups.com - 7 updates in 2 topics

['icandoallttc' via CMLHope]

009
>> Started Ponatinib 1/ 2015 15 mg
>> New Doctor--Dr Martine Extermann
>> Moffitt Cancer center sept 2017
>> Dr Balducci retired 
>> Dr Gedia PCD
>> 0 CBL. ABL
>> July 2018 dx with thyroid disease tsh 13
>> T4-normal t3-normal
>> bkbar...@aol.com: Sep 16 04:06PM 
>> 
>> HI Jeannie. I have not heard from anyone in a long while. This is Beth. Hope 
>> everyone out there is hanging in there.. My best to all of you..
>>  
>> KIndest regards, 18's for Marty and hugs to all..
>> Beth
>>  
>>  
>> -Original Message-
>> From: 'icandoallttc' via CMLHope 
>> To: cmlhope 
>> Sent: Mon, Sep 16, 2019 10:52 am
>> Subject: [CMLHope] Not getting any mail
>>  
>> HelloI am not receiving any mail from group. Has this group shut down.  
>> Anyway Igor a letter in the mail saying AcariaHealth would handle my 
>> Ponatinib from now on. I never heard from them and think it’s fraud. Anyone 
>> else heard this. Hope everyone is great.  
>> My Motto:Faith and PillsWith LoveJeaniefreeChristian Dx 1/2004 CML 
>> LeukemiaStarted Gleevec 2/2004Started Tasigna 9/2009Started Sprycel 
>> 11/2009Started Ponatinib 1/ 2015 15 mgNew Doctor--Dr Martine 
>> ExtermannMoffitt Cancer  center sept 2017Dr Balducci retired Dr Gedia PCD0 
>> CBL. ABLJuly 2018 dx with thyroid disease tsh 13T4-normal t3-normal-- 
>> -- 
>> [CMLHope]
>> A support group of http://cmlhope.com
>> -
>>  
>> You received this message because you are subscribed to the Google Groups 
>> "CMLHope" group.
>> To post to this group, send email to CMLHope@googlegroups.com
>> To unsubscribe from this group, send email to 
>> cmlhope-unsubscr...@googlegroups.com
>> For more options, visit this group at http://groups.google.com/group/CMLHope
>> --- 
>> You received this message because you are subscribed to the Google Groups 
>> "CMLHope" group.
>> To unsubscribe from this group and stop receiving emails from it, send an 
>> email to cmlhope+unsubscr...@googlegroups.com.
>> To view this discussion on the web visit 
>> https://groups.google.com/d/msgid/cmlhope/7D3D7A1F-0B96-4EE1-A9D0-A1679422842F%40aol.com.
>> Joyce Mesnarich : Sep 16 02:08PM -0500 
>> 
>> Hi Jeanie.
>> I think we all have just become quiet on this site. I have received no mail 
>> either. My husband is the CML patient. I am his caregiver. He is presently 
>> taking Bosulif. I don’t know anything about Ponatinib, so I can’t help you. 
>> But I, too, would be skeptical of getting meds from a place I didn’t know 
>> anything about. 
>> My husband was previously seeing Dr Talpaz in Michigan. We live in Southern 
>> Illinois. So it was an expensive trip and as we have gotten older we found 
>> it is just too much for us. We found a doctor at Siteman Cancer Center in St 
>> Louis (50 miles from us) and started going to him. He is elderly himself. 
>> The last 2 times we went we saw his PA. She seems good but certainly is not 
>> up to Dr Talpaz standards. We fear that his new doctor may be slipping a bit 
>> and they are keeping him from seeing patients. My husband is doing well as 
>> far as CML goes. But time is taking its toll. He has very low energy. Don’t 
>> know if that is the CML or the medication. 
>> I hope you are feeling well. I know you have had some problems in the past. 
>> I have been in this group since 2008. Seems most everybody is gone. Sad.
>> Joyce in Southern Illinois
>>  
>>  
>> myvet...@aol.com: Sep 16 08:51PM 
>> 
>> That's funny that you put out a post, I was going send one also like (hello, 
>> is anyone out there).  I don't have to now. Thanks for posting.
>> greenie
>>  
>> -Original Message-
>> From: Joyce Mesnarich 
>> To: cmlhope 
>> Sent: Mon, Sep 16, 2019 3:08 pm
>> Subject: Re: [CMLHope] Not getting any mail
>>  
>> Hi Jeanie.I think we all have just become quiet on this site.  I have 
>> received no mail either.  My husband is the CML patient.  I am his 
>> caregiver.  He is presently taking Bosulif.  I don’t know anything about 
>> Ponatinib, so I can’t help you.  But I, too, would be skeptical of getting 
>> meds from a place I didn’t know anything about.  My husband was previously 
>> seeing Dr Talpaz in Michigan.  We live in Southern Illinois.  So it was an 
>> expensive trip and as we have gotten older we found it is just too much for 
>> us.  We found a doctor at Siteman Cancer Center in St Louis  (50 miles from 
>> us) and started going to him.

Re: [CMLHope] Not getting any mail

['icandoallttc' via CMLHope]

Hi Susan. 
So sorry I sometimes just say hello to all. 
How are you and how are your counts. 
So good to hear from our special group. 
Love ya

My Motto:
Faith and Pills
With Love
Jeanie
free
Christian 
Dx 1/2004 CML Leukemia

> On Sep 20, 2019, at 8:50 AM, 'educatorsusan' via CMLHope 
>  wrote:
> 
> I guess I’m a ghost because no one said “hello” to me.
> 
> Susan Rosenthal
> 
>> On Sep 20, 2019, at 7:30 AM, myvety2k via CMLHope  
>> wrote:
>> 
>> Hi Susan, it's always glad to hear from friends we know with CML and real 
>> glad your doing so well.  Keep it going.
>> 
>> greene
>> 
>> 
>> -Original Message-
>> From: 'Icandoallttc' via CMLHope 
>> To: cmlhope 
>> Sent: Fri, Sep 20, 2019 2:58 am
>> Subject: Re: [CMLHope] Not getting any mail
>> 
>> ThAnks for answering everyone. I am still in remission and doing good.  Did 
>> anyone else get a letter from Acadia health. I didn’t think anyone could 
>> mess with your meds unless you okayed it. 
>> Good health to all. 
>> Thanks again and bless you. 
>> Jeanie
>> 
>>> On Sep 18, 2019, at 7:37 PM, rszim0702 via CMLHope 
>>>  wrote:
>>> 
>>> I am here! Not been on as much lately.
>>> Last test I was in MMR, so elated about that. 
>>> 
>>> Great to see you on here, Greenie. And of course Jeanie, thank you for 
>>> posting!
>>> 
>>> Hope you and all are doing well as we all get a wee bit older. Stay strong, 
>>> blood buddies!!!
>>> 
>>> Hugs,
>>> Susan Zimmerman
>>> 
>>> On Sep 16, 2019 6:27 PM, Joyce Mesnarich  wrote:
>>> Good to hear from you, Greenie.
>>> Joyce in Southern Illinois
>>> 
>>> 
>>> On Sep 16, 2019, at 3:51 PM, myvety2k via CMLHope 
>>>  wrote:
>>> 
>>> That's funny that you put out a post, I was going send one also like 
>>> (hello, is anyone out there).  I don't have to now. Thanks for posting.
>>> 
>>> greenie
>>> 
>>> 
>>> -Original Message-
>>> From: Joyce Mesnarich 
>>> To: cmlhope 
>>> Sent: Mon, Sep 16, 2019 3:08 pm
>>> Subject: Re: [CMLHope] Not getting any mail
>>> 
>>> Hi Jeanie.
>>> I think we all have just become quiet on this site.  I have received no 
>>> mail either.  My husband is the CML patient.  I am his caregiver.  He is 
>>> presently taking Bosulif.  I don’t know anything about Ponatinib, so I 
>>> can’t help you.  But I, too, would be skeptical of getting meds from a 
>>> place I didn’t know anything about.  
>>> My husband was previously seeing Dr Talpaz in Michigan.  We live in 
>>> Southern Illinois.  So it was an expensive trip and as we have gotten older 
>>> we found it is just too much for us.  We found a doctor at Siteman Cancer 
>>> Center in St Louis  (50 miles from us) and started going to him.  He is 
>>> elderly himself.  The last 2 times we went we saw his PA.  She seems good 
>>> but certainly is not up to Dr Talpaz standards.  We fear that his new 
>>> doctor may be slipping a bit and they are keeping him from seeing patients. 
>>>  My husband is doing well as far as CML goes.  But time is taking its toll. 
>>>  He has very low energy.  Don’t know if that is the CML or the medication.  
>>> I hope you are feeling well. I know you have had some problems in the past. 
>>>  I have been in this group since 2008.  Seems most everybody is gone.  Sad.
>>>  Joyce in Southern Illinois
>>> 
>>> 
>>> On Sep 16, 2019, at 10:52 AM, 'icandoallttc' via CMLHope 
>>>  wrote:
>>> 
>>> Hello
>>> I am not receiving any mail from group. Has this group shut down.  
>>> Anyway Igor a letter in the mail saying AcariaHealth would handle my 
>>> Ponatinib from now on. I never heard from them and think it’s fraud. Anyone 
>>> else heard this. Hope everyone is great.  
>>> 
>>> My Motto:
>>> Faith and Pills
>>> With Love
>>> Jeanie
>>> free
>>> Christian 
>>> Dx 1/2004 CML Leukemia
>>> Started Gleevec 2/2004
>>> Started Tasigna 9/2009
>>> Started Sprycel 11/2009
>>> Started Ponatinib 1/ 2015 15 mg
>>> New Doctor--Dr Martine Extermann
>>> Moffitt Cancer  center sept 2017
>>> Dr Balducci retired 
>>> Dr Gedia PCD
>>> 0 CBL. ABL
>>> July 2018 dx with thyroid disease tsh 13
>>> T4-normal t3-normal
>>> 
>>>

Re: [CMLHope] Not getting any mail

['icandoallttc' via CMLHope]

Good to hear from you Greenie. Wonderful summer.  Stay safe. 
Jeanie

My Motto:
Faith and Pills
With Love
Jeanie
free
Christian 
Dx 1/2004 CML Leukemia
Started Gleevec 2/2004
Started Tasigna 9/2009
Started Sprycel 11/2009
Started Ponatinib 1/ 2015 15 mg
New Doctor--Dr Martine Extermann
Moffitt Cancer  center sept 2017
Dr Balducci retired 
Dr Gedia PCD
0 CBL. ABL
July 2018 dx with thyroid disease tsh 13
T4-normal t3-normal

> On Sep 16, 2019, at 4:51 PM, myvety2k via CMLHope  
> wrote:
> 
> That's funny that you put out a post, I was going send one also like (hello, 
> is anyone out there).  I don't have to now. Thanks for posting.
> 
> greenie
> 
> 
> -Original Message-
> From: Joyce Mesnarich 
> To: cmlhope 
> Sent: Mon, Sep 16, 2019 3:08 pm
> Subject: Re: [CMLHope] Not getting any mail
> 
> Hi Jeanie.
> I think we all have just become quiet on this site.  I have received no mail 
> either.  My husband is the CML patient.  I am his caregiver.  He is presently 
> taking Bosulif.  I don’t know anything about Ponatinib, so I can’t help you.  
> But I, too, would be skeptical of getting meds from a place I didn’t know 
> anything about.  
> My husband was previously seeing Dr Talpaz in Michigan.  We live in Southern 
> Illinois.  So it was an expensive trip and as we have gotten older we found 
> it is just too much for us.  We found a doctor at Siteman Cancer Center in St 
> Louis  (50 miles from us) and started going to him.  He is elderly himself.  
> The last 2 times we went we saw his PA.  She seems good but certainly is not 
> up to Dr Talpaz standards.  We fear that his new doctor may be slipping a bit 
> and they are keeping him from seeing patients.  My husband is doing well as 
> far as CML goes.  But time is taking its toll.  He has very low energy.  
> Don’t know if that is the CML or the medication.  
> I hope you are feeling well. I know you have had some problems in the past.  
> I have been in this group since 2008.  Seems most everybody is gone.  Sad.
>      Joyce in Southern Illinois
> 
> 
>> On Sep 16, 2019, at 10:52 AM, 'icandoallttc' via CMLHope 
>>  wrote:
>> 
> 
> Hello
> I am not receiving any mail from group. Has this group shut down.  
> Anyway Igor a letter in the mail saying AcariaHealth would handle my 
> Ponatinib from now on. I never heard from them and think it’s fraud. Anyone 
> else heard this. Hope everyone is great.  
> 
> My Motto:
> Faith and Pills
> With Love
> Jeanie
> free
> Christian 
> Dx 1/2004 CML Leukemia
> Started Gleevec 2/2004
> Started Tasigna 9/2009
> Started Sprycel 11/2009
> Started Ponatinib 1/ 2015 15 mg
> New Doctor--Dr Martine Extermann
> Moffitt Cancer  center sept 2017
> Dr Balducci retired 
> Dr Gedia PCD
> 0 CBL. ABL
> July 2018 dx with thyroid disease tsh 13
> T4-normal t3-normal
> 
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[CMLHope] Is this correct

['icandoallttc' via CMLHope]

My Motto:
Faith and Pills
With Love
Jeanie
free
Christian 
Dx 1/2004 CML Leukemia
Started Gleevec 2/2004
Started Tasigna 9/2009
Started Sprycel 11/2009
Started Ponatinib 1/ 2015 15 mg
New Doctor--Dr Martine Extermann
Moffitt Cancer  center sept 2017
Dr Balducci retired 
Dr Gedia PCD
0 CBL. ABL
July 2018 dx with thyroid disease tsh 13
T4-normal t3-normal

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[CMLHope] Not getting any mail

['icandoallttc' via CMLHope]

Hello
I am not receiving any mail from group. Has this group shut down.  
Anyway Igor a letter in the mail saying AcariaHealth would handle my Ponatinib 
from now on. I never heard from them and think it’s fraud. Anyone else heard 
this. Hope everyone is great.  

My Motto:
Faith and Pills
With Love
Jeanie
free
Christian 
Dx 1/2004 CML Leukemia
Started Gleevec 2/2004
Started Tasigna 9/2009
Started Sprycel 11/2009
Started Ponatinib 1/ 2015 15 mg
New Doctor--Dr Martine Extermann
Moffitt Cancer  center sept 2017
Dr Balducci retired 
Dr Gedia PCD
0 CBL. ABL
July 2018 dx with thyroid disease tsh 13
T4-normal t3-normal

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[CMLHope] Merry Christmas and happy Holidays to all

['Icandoallttc' via CMLHope]

Hi all
Merry Christmas and Happy Holidays to all. 
I am ending the year fighting another disease: thyroid. At least that’s what 
they think it is.  Lost about 30 pounds: losing hair-sweating for no reason and 
more. I can’t take the meds as they make it worse. 
No matter what-fight on. 


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Re: [CMLHope] Hi Shaun question

['Icandoallttc' via CMLHope]

Thanks so much Shaun.  I always knew he was suffering and he tick on our 
sufferings too. I miss him so much.  He was helping me with my new thyroid 
disease while he was in rehab. 
Have you given some thought to having his book published?  If you decide to 
have it published I could get my daughter to help you through amazon kindle. He 
gave me parts of the book and it was so uplifting.  You can feel his love and 
care come through his pages 
I especially loved the part about the pair of walking shoes. He left his love 
on earth and I can still feel his spirit in my daily battle against leukemia 
and other old age problems he was helping us with. 
Good luck and keep in touch. 
Love ya!
Jeanie 

> On Nov 23, 2018, at 11:50 PM, Marty Gartenberg  wrote:
> 
> Hi Jeanie - 
> 
> That's OK.  My father was getting Tylenol for his pain and Ativan for his 
> anxiety.  He wasn't getting stronger pain medicines because it would give him 
> hallucinations and confusion.  I read to him several times the patient's 
> prayer and the mind of matter mantra to try to help him focus on feeling 
> better.   I hope that brought him some comfort.
> 
> To everyone in this group I wish a very happy and healthy (belated) 
> Thanksgiving. I am so grateful to see what strong support group you all have 
> with each other and glad that my Dad was able to be a part of it.  I am so 
> thankful and blessed to have had him as my father.
> 
> Regards and 18's
> Shaun
> 
> 
> 
>> On Wed, Nov 21, 2018 at 12:59 PM 'Jeanie' via CMLHope 
>>  wrote:
>> 
>> Hi Shaun
>> I know you are in a lot of grief and if you don’t feel like talking about I 
>> will understand. 
>> I have never feared death but always feared that I would be in a lot of pain 
>> while dying. My question is did they give your dad pain meds before he went 
>> into hospice?  
>> I miss him so much as he was my advisor as well as my friend. 
>> Prayers to you and yours 
>> Jeanie 
>> My Motto:
>> Faith and Pills
>> With Love
>> Jeanie
>> free
>> Christian 
>> Dx 1/2004 CML Leukemia
>> Started Gleevec 2/2004
>> Started Tasigna 9/2009
>> Started Sprycel 11/2009
>> Started Ponatinib 1/ 2015 15 mg
>> New Doctor--Dr Martine Extermann
>> Moffitt Cancer  center sept 2017
>> Dr Balducci retired 
>> Dr Gedia PCD
>> 0 CBL. ABL
>> July 2018 dx with thyroid disease tsh 13
>> T4-normal t3-normal
>> 
>>> On Nov 19, 2018, at 9:52 PM, Marty Gartenberg  wrote:
>>> 
>>> Hi Sherri,
>>> 
>>> This is Shaun.  My family and I greatly appreciate your heartwarming gift.  
>>> Thank you so very much for that.  My Mom (his wife, Rachelle) sends her 
>>> thanks, as well.
>>> 
>>> Regards,
>>> Shaun
>>> 
 On Wed, Nov 14, 2018 at 8:27 PM sherri swanson 
  wrote:
 Hello Shaun, 
 
 I am so very sorry to hear about your dad. He was such a kind and gentile 
 man and he will be missed by many.  I wanted to let you know that I have 
 planted a tree in his name in Israel. May this serve as a living tribute 
 to his memory. You and your family are in my thoughts and prayers. Marty 
 will always be in my heart and on my mind.  My heart is broken knowing I 
 will not receive another message from Marty and we will no longer share 
 share photos. 
 
 
 As long as we live, they too will live; for they are now are a part of us; 
 as we remember them. 
 
 Regards, 
 
 Sherri Swanson
 
 
 
 
 
> On Wed, Nov 14, 2018 at 6:29 PM Marty Gartenberg  wrote:
> Hi everyone -
> 
> This is Marty's son, Shaun, again.  Thank-you all so much for all the 
> stories, kind thoughts, wishes, and prayers for my Dad and our family.  
> We are all so grateful to know how loved he was and how he was able to 
> touch so many lives in a profound way.  
> 
> Hi Wayne - please do not cancel this thread.  I am still checking in on 
> it and relaying to rest of my family.  Just as he helped others, you all 
> are helping us, and we appreciate that, so much.
> 
> Regards,
> Shaun
> 
>> On Wed, Nov 14, 2018 at 7:33 AM Wayne Becken  wrote:
>> Please cancel.  Subscriber is deceased.
>> 
>>  
>> 
>>  
>> 
>> From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] 
>> Sent: November-14-18 5:14 AM
>> To: Digest recipients
>> Subject: [CMLHope] Digest for cmlhope@googlegroups.com - 1 update in 1 
>> topic
>> 
>>  
>> 
>> cmlhope@googlegroups.com
>> 
>> Google Groups
>> 
>> 
>> 
>> Topic digest 
>> View all topics
>> 
>> ·   Update on Marty G - 1 Update
>> 
>> Update on Marty G
>> 
>> Tracie Camlin : Nov 13 06:50AM -0600 
>> 
>> Dear Shaun and Family,
>>  
>> I am so sorry for your loss. He was truly an amazing person who inspired
>> and supported so many of us. His strength and courage held me up at times
>> he didn't even know about. He will be missed. 

Re: [CMLHope] Hey there

['Icandoallttc' via CMLHope]

Hi Joyce
How do you take care of blood clots and what do they look like?  My chemo 
Causes blood clots and was recalled because of this and causing heart attacks 
and HP. I take aspirin with mine and have had HP most of my adult life.  hP 
meds gives me heart pain so I just do the best we can. 
Let's all remember Millie in our prayers. She was a brave warrior. She said her 
pee had turned black and she had a sore on her foot wouldn't heal.  Of course 
anyone from this list who stays in your heart and this list was your basic 
contact.  Millie could really cook and she would give me recipes.  I told her 
it was strange I'm from Fl and she's from PA and we still love same of same 
foods.  She lived to cook and freeze for later.  
More later



> On Feb 21, 2018, at 12:11 AM, Joyce Mesnarich  wrote:
> 
> Jeanie,
> I am doing very well since I got home from the double surgery and dealing 
> with the blood clots.  I am not bedridden.  I get around pretty well but have 
> trouble with my knees.
> We truly are warriors.  And Marty is our cheerleader!  
> I wish you all the best.
> God bless and keep you.
> Joyce in Southern Illinois
> 
> 
>> On Feb 19, 2018, at 8:26 AM, 'Jeanie' via CMLHope  
>> wrote:
>> 
>> 
>> Hey Joyce
>> Wow!  You have really been through the mill. So happy you made it through. 
>> You and I are about the same age and that it the reason I never pushed for 
>> surgery. Sounds like you are well on the way to recovery.  
>> I would have it done if I could get up the nerve. I have been in the 
>> hospital but no doctor ever pushed for surgery.  
>> We are warriors and MArty is our faithful leader so let's just keep fighting 
>> a good battle. 
>> Do you have to go to the dr much Marty?
>> I go every three months to Moffitt and a couple month to my PCd.  
>> I pray Joyce that all will be alright. Are you bed ridden ?
>> Keep fighting. 
>> My Motto:
>> Faith and Pills
>> With Love
>> 18's
>> Dx 1/2004 CML Leukemia
>> Started Gleevec 2/2004
>> Started Tasigna 9/2009
>> Started Sprycel 11/2009
>> Started Ponatinib 1/ 2015
>> New Doctor--Dr Martine Extramine
>> 0 CBL. ABL
>> 
>>> On Feb 17, 2018, at 8:13 AM, Marty Gartenberg  wrote:
>>> 
>>> You see Joyce that slideshow actually did it's thing for you, not to 
>>> mention about why i always add my 18's. You and your husband have gone 
>>> through a lot, but both of you keep on bouncing back. And i can honestly 
>>> vouch for that.
>>> 
>>> When your feeling lousy why don't you watch that slide show again?
>>> 
>>> You know that everyone also has their own set of problems but it is in the 
>>> way that they handle them.
>>> 
>>> Glad that your both feeling better. This is for you... 
>>> 
>>> 18's,
>>> 
>>> Marty 
>>> 
 On Sat, Feb 17, 2018 at 12:09 AM, Joyce Mesnarich  wrote:
 Beautiful slideshow, Marty.  Thank you.
 Have not been on this site for 3 weeks.  Went to ER with gallbladder 
 attack and they did a CAT scan and noticed that my old hiatal hernia that 
 has been bugging me for some 20 years had twisted, and evidently that is a 
 very bad thing, because they put me in an ambulance and sent me from our 
 local hospital to BarnesJewish in St Louis and said I would have emergency 
 surgery as soon as I got there.  That didn’t happen but I was in the 
 hospital for 3 days as they did test upon test.  I went home for 3 days 
 and had surgery on Monday the next week.  Had gallbladder removed and 
 hiatal hernia was repaired.  I was doing very well and planned to go home 
 on Wednesday when my oxygen levels went down.  Long story short:  I had 
 blood clots in both lungs and one in my right calf.  Was in hospital for 8 
 days and came home using belly shots of Lovenox to bridge to warfarin.  Am 
 doing better and gaining strength.  Had to eat pureed food for 2 weeks.  
 Now on soft diet.  It was a trying time because I am the caregiver for my 
 husband who has CML and is also legally blind.  But we  pulled through 
 with the help of our two daughters.  I’ll have to get caught up on what 
 went on while I was out of commission.
 Joyce in Southern Illinois
 
 
 > On Feb 16, 2018, at 10:36 AM, Marty Gartenberg  wrote:
 >
 > 
 
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Re: [CMLHope] Digest for cml...@googlegroups.com - 8 updates in 1 topic

[ICANDOALLTTC via CMLHope]

Hi everyone,
I haven't had a stroke but the chemo I'm on now, Ponatinib, will cause  
stroke, blood clots, heart attacks, and you name it is a side effect of this  
chemo, however, after being in blast I went into remission within just 3 
months  on this chemo; Praise God from whom all blessings flo.
 
My girls and grandson took me out for a fantastic lunch yest. and what a  
memory maker that is.
 
My mother had a stroke when she was about 78 and the only thing she could  
remember was how to sign her name.  She had to learn how to speak and write  
again; went to classes and soon was almost back to normal.  Strokes run in  
our family; my grandmother and mother plus my sister all having them at 
about  age 78.  My sister didn't make it through hers but my grandmother and  
mother did.
 
Could you tell us how you felt when you were having your stroke?  Did  you 
take aspirin?
 
I found out I had leukemia in 2009 after being so tired after my usual  
walks.  Had blood test and immediately put in hospital for blood cleansing  and 
then put on Gleevec.  It was a rough road on Gleevec and then the  mutants 
took over---more later.
Enjoy the day and keep on fighting warrior.
 
 
In a message dated 6/1/2017 7:54:16 A.M. Eastern Daylight Time,  
wa2...@gmail.com writes:

on  here.

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Re: [CMLHope] Medicare retirement

['Icandoallttc' via CMLHope]

I use Medicare part D prescription coverage.  They cover most of the cost I 
also chose to go with Medicare part A and B.  This has worked great for me. And 
yes talk to your Medicare office. I use Humana for drugs. Good luck.  



> On Feb 5, 2017, at 8:07 AM, 'Boogie_Woogie' via CMLHope 
>  wrote:
> 
> 
> Any advice for me?I want to retire this June.  Any advice on which presc. 
> Coverage is better coverage?  
> 
> Signed too tired to keep workin 
> 
> Thanks. . 14 years cml survivor 
> Sent from my iPad
> 
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Re: [CMLHope] My sister, me and my older brother

['Icandoallttc' via CMLHope]

Did you fall Marty? 



> On Sep 24, 2016, at 12:30 PM, ANGELYN ESDERS  wrote:
> 
> 
> LOVE the picture, and many thanks for sharing. You look like a beautiful, 
> joyful group.
> Angie
> From: Marty Gartenberg 
> To: 
> Sent: Saturday, September 24, 2016 11:06 AM
> Subject: [CMLHope] My sister, me and my older brother
> 
> I am starting to get back to my self after breaking my neck and arm and 
> elbow. Somehow all of you seem to be always there to be helping throughout my 
> life, and I will not ever forget every single one of you precious people. I 
> hope that this picture comes through.  It is more then 66 years old.
> 
> 
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Re: [CMLHope] My sister, me and my older brother

['Icandoallttc' via CMLHope]

Beautiful I love those old pictures!!! Glad you are back on. 



> On Sep 24, 2016, at 11:06 AM, Marty Gartenberg  wrote:
> 
> I am starting to get back to my self after breaking my neck and arm and 
> elbow. Somehow all of you seem to be always there to be helping throughout my 
> life, and I will not ever forget every single one of you precious people. I 
> hope that this picture comes through.  It is more then 66 years old.
> 
> 
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Re: [CMLHope] The wounded Soldier

['Icandoallttc' via CMLHope]

Yes, they never told the truth about pesticides back then. I put nothing in my 
yard these days. 
They also did mass spraying for mosquitoes back then.  They would drive by and 
have a big sprayer going. 
I never knew what was in that spray.   Like you said who knows???
I hope they are making a safer world today for our kids.  Love❤️

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On May 22, 2016, at 11:55 AM, Marty Gartenberg <wa2...@gmail.com> wrote:
> 
> Funny you should mention insecticides. Gets me wondering about defoliants 
> specially agent orange. When I was in Vietnam they were spraying it all over 
> the place and I was really exposed to it. Gets me thinking about all of the 
> other guys that were there and now are not survivors because all of the 
> problems they encountered and we all were lied to... 
> 
> 18's,
> 
> Marty  
> 
>> On Sun, May 22, 2016 at 10:18 AM, 'Icandoallttc' via CMLHope 
>> <cmlhope@googlegroups.com> wrote:
>> Yes great news!!! The only thing I was doing different was donating blood 
>> and getting tooth X-rays and dental work.  I did live by a farm that sprayed 
>> insecticides a lot. I had taken a plane trip on which I thought the coffee 
>> tasted terrible.  
>> We were very free with insecticides in the 50s.  Who knows???
>> We were all exposed but only I got CML.  
>> What a great warrior you are Marty!!! 
>> Love ya!!!
>> 
>> 
>> 
>>> On May 21, 2016, at 9:37 PM, Marty Gartenberg <wa2...@gmail.com> wrote:
>>> 
>>> Hi Kathy,
>>> 
>>> I actually have had 96 blood transfusions as well as dozens of platelet 
>>> infusions not mention about a dozen Gamagloblin infusions while I was 
>>> having my bone marrow transfusion. Let me explain why. I was born with type 
>>> O+ blood. Since my donor (my sister) was B+ and also a perfect HLA match 
>>> but the only problem was our different blood types. I had to become what is 
>>> called a Chimera. And unlike a solid organ transplant where the blood 
>>> typing must be the same between the donor and that have to be reciprocal of 
>>> each other.
>>> That is why I had to have so many blood transfusions.  
>>> 
>>> Now it is over twenty seven years later and I had to have a kidney 
>>> transplant and the donor was also a perfect HLA match and even our blood 
>>> types matched. Now one more piece of information. If my Kidney came from a 
>>> living donor then it would be okay to have a blood type of O+ but not from 
>>> a deceased donor.
>>> 
>>> They are making some progress in mis-matched organ transplants.
>>> 
>>> So in my case I didn't acquire CML because I didn't have to have all of 
>>> those blood transfusions, I got CML before I got all of the transfusions.
>>> 
>>> Kathy, I would love to put you into the zero Zavie's list but even though I 
>>> am number 1 on it I am unable to do it unfortunately Zavie is no longer 
>>> with us.  
>>> 
>>> However I am so glad to hear about your progress in getting rid of those 
>>> nasty cells is working so well.
>>> 
>>> 18's,
>>> 
>>> Marty
>>> 
>>>> On Sat, May 21, 2016 at 1:43 PM, kathy walls <cand...@originalsbykate.com> 
>>>> wrote:
>>>> Marty
>>>> Have you heard about one have had mega blood transfusions getting CML? 
>>>> Since 2005 I have over 25 transfusions due to sever blood loss during 
>>>> sugeries? Happy to say now I'm at 0.04 Can I get a Zevia ###
>>>> 
>>>> Sent from my iPhone
>>>> 
>>>>> On May 21, 2016, at 12:04 PM, Marty Gartenberg <wa2...@gmail.com> wrote:
>>>>> 
>>>>> Jeanie,
>>>>> 
>>>>> It all comes down to something that I wrote about the why's...
>>>>> 
>>>>> Why me? or Why not me.
>>>>> 
>>>>> You asked since no one in your family ever had Leukemia then why did you? 
>>>>> Also why me? Believe me I have tons of information that I have collected 
>>>>> for over 27 years and I have stumbled into some of them.
>>>>> 
>>>>> Since I have been an Electrical Engineer for most of my life I had to 
>>>>> work on many projects concerning very high voltages that also included 
>>>>> high amounts of radio frequen

Re: [CMLHope] The wounded Soldier

['Icandoallttc' via CMLHope]

Someone is doing zavie numbers on a Facebook page. I never could find it. Can 
someone post again



> On May 21, 2016, at 1:43 PM, kathy walls <cand...@originalsbykate.com> wrote:
> 
> Marty
> Have you heard about one have had mega blood transfusions getting CML? Since 
> 2005 I have over 25 transfusions due to sever blood loss during sugeries? 
> Happy to say now I'm at 0.04 Can I get a Zevia ###
> 
> Sent from my iPhone
> 
>> On May 21, 2016, at 12:04 PM, Marty Gartenberg <wa2...@gmail.com> wrote:
>> 
>> Jeanie,
>> 
>> It all comes down to something that I wrote about the why's...
>> 
>> Why me? or Why not me.
>> 
>> You asked since no one in your family ever had Leukemia then why did you? 
>> Also why me? Believe me I have tons of information that I have collected for 
>> over 27 years and I have stumbled into some of them.
>> 
>> Since I have been an Electrical Engineer for most of my life I had to work 
>> on many projects concerning very high voltages that also included high 
>> amounts of radio frequencies especially from some of the power stations that 
>> feed radio and television transmitters.
>> 
>> I had some friends that used to work for Con Edison in one of the power sub 
>> stations which I had to be involved with from time to time. Whenever I would 
>> enter the felicity the hair on my head and arms would stand on edge even 
>> though some of those high voltage tunnels required everyone in those high 
>> voltage areas had to wear something called a Faraday shield and some of the 
>> power coming into that felicity from the main generating station was around 
>> 500,000 volts.
>> 
>> As it turned out there were six people working in the facility but not every 
>> time in those high voltage tunnels, but I guess enough for everyone to have 
>> acquired cancer of different kinds, mostly Leukemia AML but also brain, lung 
>> and Myelodysplastic Syndrome which proved fatal to all of them except for 
>> the one with Myelodysplastic Syndrome which had no cure.
>> 
>> Amazingly he seemed to have beaten it without any explanation from the 
>> doctor, and I actually recommended him to that doctor because I knew one of 
>> the doctors at the time that I had my bone marrow transplant 26 years ago 
>> that specialized in Myelodysplastic Syndrome so I asked him does
>> this ever happen? He told me that every once in a while it does happen.
>>  
>> That man never returned to working with anything to do with high voltage 
>> electricity. Eventually when I moved to Florida we lost contact with each 
>> other.
>> 
>> There was another article that I read about power lines that ran through the 
>> back yards of peoples homes and it was found that a small percentage of 
>> those people that lived near any power lines that had about 13,000 volts did 
>> in fact have a higher chance of them getting cancer then those that did not 
>> live near ant power lines.
>> 
>> Also how about what is in the our water or air or the food that we eat and 
>> drink? So let's say that if you are not the one that has the then it May not
>> happen to you. Who knows? Only time may tell?
>> 
>> 18's,
>> 
>> Marty
>> 
>> 
>>> On Sat, May 21, 2016 at 10:49 AM, 'Icandoallttc' via CMLHope 
>>> <cmlhope@googlegroups.com> wrote:
>>> Yes Marty I've always wondered why I got leukemia.  I am the youngest of 11 
>>> children and no cancer in family except lung cancer and 1 breast cancer in 
>>> my older sister.  
>>> I didn't even know much about leukemia when I was dx.  
>>> Even with fighting cml for 12 years I have had a full rich life. 
>>> I got to go to the mountains with my daughters and granddaughter.  We 
>>> stayed in a beautiful cabin high in the mountains.  
>>> We toured the Great Smoky Mountains and they are beautiful.  
>>> I am now spending a week with my daughters and we are enjoying our visit. 
>>> Yes we are born and then we die but sickness teaches us to live each day as 
>>> it comes love each other with the time God gives us.  
>>> Blessings to all 
>>> ❤️❤️
>>> 
>>> My Motto: Faith and Pills❤️
>>> With Jeanie 18,s Chi
>>> Dx 1/2004. CML Leukemia
>>> Started Gleevec 2/2004
>>> Started Tasigna  9/2009
>>> Started Sprycel 11/2009
>>> Started Ponatinib January 2015
>>> Dr Balducci Moffitt Cancer Center
>>> 
>>>> On May 20, 2016, at 10:30 AM, Marty Gartenberg <wa2...@gmail.com> wrote:
>>>>

Re: [CMLHope] The wounded Soldier

['Icandoallttc' via CMLHope]

>>> 
>>> There was another article that I read about power lines that ran through 
>>> the back yards of peoples homes and it was found that a small percentage of 
>>> those people that lived near any power lines that had about 13,000 volts 
>>> did in fact have a higher chance of them getting cancer then those that did 
>>> not live near ant power lines.
>>> 
>>> Also how about what is in the our water or air or the food that we eat and 
>>> drink? So let's say that if you are not the one that has the then it May not
>>> happen to you. Who knows? Only time may tell?
>>> 
>>> 18's,
>>> 
>>> Marty
>>> 
>>> 
>>>> On Sat, May 21, 2016 at 10:49 AM, 'Icandoallttc' via CMLHope 
>>>> <cmlhope@googlegroups.com> wrote:
>>>> Yes Marty I've always wondered why I got leukemia.  I am the youngest of 
>>>> 11 children and no cancer in family except lung cancer and 1 breast cancer 
>>>> in my older sister.  
>>>> I didn't even know much about leukemia when I was dx.  
>>>> Even with fighting cml for 12 years I have had a full rich life. 
>>>> I got to go to the mountains with my daughters and granddaughter.  We 
>>>> stayed in a beautiful cabin high in the mountains.  
>>>> We toured the Great Smoky Mountains and they are beautiful.  
>>>> I am now spending a week with my daughters and we are enjoying our visit. 
>>>> Yes we are born and then we die but sickness teaches us to live each day 
>>>> as it comes love each other with the time God gives us. 
>>>> Blessings to all 
>>>> ❤️❤️
>>>> 
>>>> My Motto: Faith and Pills❤️
>>>> With Jeanie 18,s Chi
>>>> Dx 1/2004. CML Leukemia
>>>> Started Gleevec 2/2004
>>>> Started Tasigna  9/2009
>>>> Started Sprycel 11/2009
>>>> Started Ponatinib January 2015
>>>> Dr Balducci Moffitt Cancer Center
>>>> 
>>>>> On May 20, 2016, at 10:30 AM, Marty Gartenberg <wa2...@gmail.com> wrote:
>>>>> 
>>>>> I was thinking about most of us that have been through a mirage of 
>>>>> illnesses, myself included, and in thinking about it I have come to the 
>>>>> conclusion  "why me" syndrome. However rather saying this, even though we 
>>>>> may be suffering in our own ways why not say "why not me"?.
>>>>> In effect anyone that has had any health disturbance/s in their lives are 
>>>>> in fact a wounded solider, however, it has also become that wounds heal 
>>>>> and this makes us go on.
>>>>> I remember two movies that put an impression on me. One was the Shawshank 
>>>>> Redemption. One of the characters, Morgan Freeman told an inmate that 
>>>>> "you either get to living or get to dying.
>>>>> The other was Forrest Gump, played by Tom Hanks. He was sitting on a 
>>>>> bench at a bus stop and was talking to a woman who was a total stranger 
>>>>> to him. One of the remarks he made, and this was after his mother had 
>>>>> passed away. He said she once taught him a lesson about life, "life is 
>>>>> like a box of chocolates you never know what you will get"
>>>>>  
>>>>>  
>>>>> When we think about it the one thing that we still have is life. We also 
>>>>> know that every person in this world will have already been borne and 
>>>>> eventually will have to die, it is just how we live our lives in between 
>>>>> those times that really matters, and makes us what we are.
>>>>> Try to be kind to most people, be compassionate, say hello every one once 
>>>>> in a while.
>>>>> Remember, that life is what you put in to it, and get out of it.
>>>>> 18,s
>>>>> Marty Gartenberg
>>>>> -- 
>>>>> -- 
>>>>> [CMLHope]
>>>>> A support group of http://cmlhope.com
>>>>> -
>>>>>  
>>>>> You received this message because you are subscribed to the Google Groups 
>>>>> "CMLHope" group.
>>>>> To post to this group, send email to CMLHope@googlegroups.com
>>>>> To unsubscribe from this group, send email to 
>>>>> cmlhope-unsubscr...@googlegroups.com
>>>>> For more options, visit this group at 
>

Re: [CMLHope] The wounded Soldier

['Icandoallttc' via CMLHope]

Yes Marty I've always wondered why I got leukemia.  I am the youngest of 11 
children and no cancer in family except lung cancer and 1 breast cancer in my 
older sister.  
I didn't even know much about leukemia when I was dx.  
Even with fighting cml for 12 years I have had a full rich life. 
I got to go to the mountains with my daughters and granddaughter.  We stayed in 
a beautiful cabin high in the mountains.  
We toured the Great Smoky Mountains and they are beautiful.  
I am now spending a week with my daughters and we are enjoying our visit. 
Yes we are born and then we die but sickness teaches us to live each day as it 
comes love each other with the time God gives us.  
Blessings to all 
❤️❤️

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On May 20, 2016, at 10:30 AM, Marty Gartenberg  wrote:
> 
> I was thinking about most of us that have been through a mirage of illnesses, 
> myself included, and in thinking about it I have come to the conclusion  "why 
> me" syndrome. However rather saying this, even though we may be suffering in 
> our own ways why not say "why not me"?.
> 
> In effect anyone that has had any health disturbance/s in their lives are in 
> fact a wounded solider, however, it has also become that wounds heal and this 
> makes us go on.
> 
> I remember two movies that put an impression on me. One was the Shawshank 
> Redemption. One of the characters, Morgan Freeman told an inmate that "you 
> either get to living or get to dying.
> 
> The other was Forrest Gump, played by Tom Hanks. He was sitting on a bench at 
> a bus stop and was talking to a woman who was a total stranger to him. One of 
> the remarks he made, and this was after his mother had passed away. He said 
> she once taught him a lesson about life, "life is like a box of chocolates 
> you never know what you will get"
> 
>  
> 
>  
> 
> When we think about it the one thing that we still have is life. We also know 
> that every person in this world will have already been borne and eventually 
> will have to die, it is just how we live our lives in between those times 
> that really matters, and makes us what we are.
> 
> Try to be kind to most people, be compassionate, say hello every one once in 
> a while.
> 
> Remember, that life is what you put in to it, and get out of it.
> 18,s
> Marty Gartenberg
> 
> -- 
> -- 
> [CMLHope]
> A support group of http://cmlhope.com
> -
>  
> You received this message because you are subscribed to the Google Groups 
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Re: [CMLHope] Re: Gleevec resistance? Or just a spike?

['Icandoallttc' via CMLHope]

Hi Raj
I was in Gleevec for 5 years and then it quit working for me. My platelets and 
WBC shot up really high. I was put in Tasigna but it never worked for me. Then 
I went in sprycel and it worked for a few years and put me in remission. It 
quit working and again my platelets and WBC shot up.  I'm on Ponatinib now and 
doing really good in it.  Make sure not to do proton pump inhibitors while on 
tkis. 
How are your regular blood results. 
Good luck. 


My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On May 19, 2016, at 12:10 AM, Richard H  wrote:
> 
> When I have never had a long response of 0.000  response.  I was off Gleevec 
> for 6 1/2 years, when had to go back on Gleevec.  I have actually  reduced 
> Gleevec to 300mg because CML likes to to work on my blood.  I run from 0.000 
> to 0.00.3 on my Bcd-abl every 3-6 months.  It is not being called resistance, 
> but my controlled CML world seems to stay very controlled at this point.  So 
> if they put you on Gleevec again it should be Okay.  When I went back on 400 
> mg of Gleevec it started decreasing my hemg. and I was headed for more 
> transfusions.  When my ONC lowered it to 300mg we could get Procrit to build 
> my hemg so that I don't have to have a transfusion.   I was diagnosed in 2002.
> 
> Keep a positive mind and know that will help to pass this bump in the road.  
> Gleevec has the most history for our ONC to work with and that is the reason 
> I have remained on Gleevec,  Other health problems makes the newer drugs  
> make changing to them not the best choice.
> 
> Richard H.
> 
>> On Wednesday, May 18, 2016 at 8:05:48 PM UTC-5, Raj wrote:
>> Hello All,
>> I am new to the group. Hope you can help answer my question. 
>> History: I was diagnosed CML  in 2001. After 2-3 years On gleevec 400mg, I 
>> was in major molecular response and then undetectable (0.000) for around > 
>> 10 years or so..
>> Now suddenly last month in my last Bcd-abl it showed that I am 
>> 0.018 and repeating it after a month, it's 0.021 so little bit higher than 
>> last one..
>> Is it considered gleevec resistance? Where I need to switch?
>> BTW:
>> I missed 3 doses or so in the last month and that is 
>> Where it (Bcd-abl by PCR) came 0.018 but not sure if 3 days can be that 
>> critical. Also I don't take medicine at the same time sometimes with 
>> breakfast sometimes with late lunch.  Can that suddenly change the response?
>> 
>> Any thoughts or similar situation insight is much appreciated..
>> Thanks
>> Raj
>> 
> 
> -- 
> -- 
> [CMLHope]
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[CMLHope] Getting better

['Icandoallttc' via CMLHope]

Thanks Beth, Marty, and everyone for uplifting me.  I hadn't had the flu in so 
long I forgot how sick it makes you. 
It must be a virus the flu shot didn't cover. 
I am much better but have deep congestive cough.  
Almost done with antibiotics.  
My girls are taking me to the mountains. We are leaving Sunday 
They have rented a cabin on a mountain so I think I'll be ok 
Praying for all of you. ❤️❤️


My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

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Re: [CMLHope] Really sick with sore throat and flu. I had my flu shots so

['Icandoallttc' via CMLHope]

Hi Beth and thank you so much for your love and concern. II am taking 
antibiotics and this is my sixth day. My throat has cleared up but I have a 
deep congestive cough. I am getting better. Each day I feel a little stronger. 
I think there is a virus going around that no one has identified yet. Anyway 
have a wonderful weekand thanks again. This group has really boosted my morale 
Greatly. Love you



> On May 11, 2016, at 5:26 PM, bkbarney via CMLHope <cmlhope@googlegroups.com> 
> wrote:
> 
> Jeanie, thinking of you and hoping you feel better soon. I agree with others 
> here, please act swiftly and see your doc. If you do need antibiotics you can 
> get on them sooner verses later...it seems like once something gets through 
> our immune systems, it's harder to recover because of the meds...you take 
> good care and keep us posted. 
> 
> Love, Beth
> 
> 
> -Original Message-
> From: Marty Gartenberg <wa2...@gmail.com>
> To: cmlhope <cmlhope@googlegroups.com>
> Sent: Tue, May 10, 2016 8:41 pm
> Subject: Re: [CMLHope] Really sick with sore throat and flu. I had my flu 
> shots so
> 
> Hi Jeannie,
> 
> Sorry to hear this. You like I am immunocomprimised and that is probably why 
> your flu like symptoms are persisting.
> 
> As far as antibiotics go if in fact you are suffering from a viral infection 
> then antibiotics are probably useless however if your suffering from a 
> bacterial infection then antibiotics will usually work, but I would suggest 
> that you run it by your doctor. He or she will probably take a culture to see 
> exactly what is going on and will know what to treat you with.
> 
> By the way sometimes it takes more then a few days to grow the culture so it 
> will probably be a good idea to act on it ASAP.
> 
> Do you know what a Spirometer is? Read below, and believe me it really works. 
> It will help keep your lungs clear. I use it anytime that my lungs are having 
> any problems.
> 
> I hope that you start feeling better.
> 
> 18's,
> 
> Marty
> 
> How to use an Incentive Spirometer
> Sit up and hold the incentive spirometer.
> Place the mouthpiece of the incentive spirometer in your mouth. Make sure you 
> make a good seal over the mouthpiece with your lips.
> Breathe out (exhale) normally.
> Breathe in (inhale) SLOWLY.
> A piece in the incentive spirometer will rise as you breathe in.
> Try to get this piece to rise as high as you can.
> Usually, there is a marker placed by your doctor that tells you how big of a 
> breath you should take.
> A smaller piece in the incentive spirometer looks like a ball or disc.
> Your goal should be to make sure this ball stays in the middle of the chamber 
> while you breathe in.
> If you breathe in too fast, the ball will shoot to the top.
> If you breathe in too slowly, the ball will stay at the bottom.
> Hold your breath for 3 to 5 seconds. Then slowly exhale.
> Take 10 to 15 breaths with your spirometer every 1 to 2 hours, or as often as 
> instructed by your nurse or doctor.
> 
> 
> 
> 
> 
> 
>> On Tue, May 10, 2016 at 11:39 AM, 'Icandoallttc' via CMLHope 
>> <cmlhope@googlegroups.com> wrote:
>> Hello all
>> I pray that everyone is good today and just wanted to let you know I am 
>> really sick with a sore throat and flu. I had my flu shots and never get the 
>> flu after receiving them. I was wondering if any of you have taken 
>> antibiotics while sick and on chemo. I am taking amoxicillin and Clarimicin. 
>>  Thank you guys for all your wonderful support.
>> 
>> My Motto: Faith and Pills❤️
>> With Jeanie 18,s Chi
>> Dx 1/2004. CML Leukemia
>> Started Gleevec 2/2004
>> Started Tasigna  9/2009
>> Started Sprycel 11/2009
>> Started Ponatinib January 2015
>> Dr Balducci Moffitt Cancer Center
>> 
>> --
>> --
>> [CMLHope]
>> A support group of http://cmlhope.com
>> -
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>> You received this message because you are subscribed to the Google Groups 
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> 
> -- 
> -- 
> [CMLHo

[CMLHope] No I have never had such a sore throat either except when I had strep. I'm some better. Thanks Marty great advice.

['Icandoallttc' via CMLHope]

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Re: [CMLHope] Really sick with sore throat and flu. I had my flu shots so

['Icandoallttc' via CMLHope]

Hi Joyce and thanks so much. I have been so sick I can't remember the last time 
I had the flu. So you are right that was a bad batch of flu medicine. I know 
what you mean about not being able to enjoy company. I was supposed to be on my 
vacation and the girls had to leave without me. I am hoping to feel well enough 
to go on their second lag up to the mountains. My daughter rented a cabin up on 
a mountain. But if I don't start feeling better I won't be able to make it. 
This flu started with a very bad throat pain. Then went down into my chest and 
I am having deep chest coughing. 
Good luck with your company and get better. I love you.

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On May 10, 2016, at 1:45 PM, Joyce Mesnarich <joy...@htc.net> wrote:
> 
> Jeanie,
> So sorry to hear you have the sore throat and flu.  I am getting over it too. 
>  We had company who brought the bug with them from the east coast.  They come 
> on Monday and I got it on Thursday.  Since I have asthma everything I get 
> goes directly into bronchitis or pneumonia I went to the doctor Fri and got 
> some medicine.  Gave me prednisone and and antibiotic.  It worked pretty 
> quick but I hate taking steroids.  I have been wired for 3 days.  I am still 
> coughing some but am feeling much better.  It is not fun being sick and even 
> worse when you are sick with loved ones visiting and you want to enjoy them.  
> My husband is the CML patient, so me taking antibiotics has nothing to do 
> with TKIs.  I, too, had my flu shots last fall and this is the second time I 
> have had flu.  That really was a bad batch of flu vaccine.
> Hope you feel better quickly.
>  Joyce in IL
> 
> 
>> On May 10, 2016, at 10:39 AM, 'Icandoallttc' via CMLHope 
>> <cmlhope@googlegroups.com> wrote:
>> 
>> Hello all
>> I pray that everyone is good today and just wanted to let you know I am 
>> really sick with a sore throat and flu. I had my flu shots and never get the 
>> flu after receiving them. I was wondering if any of you have taken 
>> antibiotics while sick and on chemo. I am taking amoxicillin and Clarimicin. 
>>  Thank you guys for all your wonderful support.
>> 
>> My Motto: Faith and Pills❤️
>> With Jeanie 18,s Chi
>> Dx 1/2004. CML Leukemia
>> Started Gleevec 2/2004
>> Started Tasigna  9/2009
>> Started Sprycel 11/2009
>> Started Ponatinib January 2015
>> Dr Balducci Moffitt Cancer Center
>> 
>> -- 
>> -- 
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Re: [CMLHope] Really sick with sore throat and flu. I had my flu shots so

['Icandoallttc' via CMLHope]

Thanks Greenie. I hope you are well 

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On May 10, 2016, at 11:44 AM, Myvety2k via CMLHope  
> wrote:
> 
> Hi Jeanie, I had a problem a month ago and received a Z-pack, problem solved. 
>  Then everyone is different.
>  
> greenie
>  
> In a message dated 5/10/2016 11:39:17 A.M. Eastern Daylight Time, 
> cmlhope@googlegroups.com writes:
> Hello all
> I pray that everyone is good today and just wanted to let you know I am 
> really sick with a sore throat and flu. I had my flu shots and never get the 
> flu after receiving them. I was wondering if any of you have taken 
> antibiotics while sick and on chemo. I am taking amoxicillin and Clarimicin.  
> Thank you guys for all your wonderful support.
> 
> My Motto: Faith and Pills❤️
> With Jeanie 18,s Chi
> Dx 1/2004. CML Leukemia
> Started Gleevec 2/2004
> Started Tasigna  9/2009
> Started Sprycel 11/2009
> Started Ponatinib January 2015
> Dr Balducci Moffitt Cancer Center
> 
> -- 
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[CMLHope] Really sick with sore throat and flu. I had my flu shots so

['Icandoallttc' via CMLHope]

Hello all
I pray that everyone is good today and just wanted to let you know I am really 
sick with a sore throat and flu. I had my flu shots and never get the flu after 
receiving them. I was wondering if any of you have taken antibiotics while sick 
and on chemo. I am taking amoxicillin and Clarimicin.  Thank you guys for all 
your wonderful support.

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

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Re: [CMLHope] A lesson. It's not what your cup is all about.

['Icandoallttc' via CMLHope]

That's cute Marty.  
My mom could make the best hot chocolate.  I wish she could make me some right 
now. Thanks 

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On May 6, 2016, at 5:13 PM, Marty Gartenberg  wrote:
> 
> It's not what your cup is all about, but rather what is in your cup. Hot 
> Chocolate. Sit back and relax and enjoy this because it has meaning to it. 
> 
> 18's,
> 
> Marty 
> -- 
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[CMLHope] Creatine levels

['Icandoallttc' via CMLHope]

Hi Beth and thanks. 
My Creatine level was 0.9. The normal is 0.5-1.0. 

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On May 3, 2016, at 2:44 PM, bkbarney via CMLHope <cmlhope@googlegroups.com> 
> wrote:
> 
> CPK doubled in the last two months to 700. Monoclonal protein they had been 
> tracking for the last two years is up...BCR abl will hopefully be a good 
> result... Then we plan from there...
> 
> Marty, I just went to the national Bone Marrow Transplant Survivors 
> conference this weekend...I went as the caregiver and helper to my best 
> friend who is now 2.5 years out and struggling with graft vs host. I went to 
> 9 seminars and met lots of people ..wow...so humbling, inspiring, 
> overwhelming...and I thought of you.all those years agobefore all these 
> advances have been made.hope you are feeling better...I know you will 
> stay positive, and strong..I am thinking of you..
> 
> 
> and Jeanie,  the session I went to on faith, spirituality and illness was 
> right up your alley...you and many other's here..
> 
> also did a nice piece on yoga and meditation, complementary medicines, 
> nutritionpain management, sleep issues...etc..etc..really well done 
> weekend. 
> 
> and the importance of not getting lost in our heads, in fear, and 
> ruminating...but instead, staying anchored, and reaching out so we are not in 
> isolation
> Thinking of all of you..
> 
> Love, Beth
> 18's..
> 
> 
> -Original Message-
> From: 'Icandoallttc' via CMLHope <cmlhope@googlegroups.com>
> To: cmlhope <cmlhope@googlegroups.com>
> Sent: Tue, May 3, 2016 12:12 pm
> Subject: Re: [CMLHope] Prayers are offered.
> 
> What are the changes in your blood work if u don't mind sharing Beth?I have 
> several things out of range but just slightly. 
> 
> 
> My Motto: Faith and Pills❤️
> With Jeanie 18,s Chi
> Dx 1/2004. CML Leukemia
> Started Gleevec 2/2004
> Started Tasigna  9/2009
> Started Sprycel 11/2009
> Started Ponatinib January 2015
> Dr Balducci Moffitt Cancer Center
> 
> On May 2, 2016, at 6:14 PM, 'Marcie Goodman' via CMLHope 
> <cmlhope@googlegroups.com> wrote:
> 
> Beth, yes, a long time since you've posted. Please let us know your results. 
> Sending prayers and hugs. 
> 
> Marcie
> 
> Sent from my iPhone
> 
> On May 2, 2016, at 2:05 PM, bkbarney via CMLHope <cmlhope@googlegroups.com> 
> wrote:
> 
> Thank you Richard for your kind words and prayers. They are always so 
> appreciated. You are such a stable presence here. I so appreciate your 
> thoughts and help. I hope everyone is navigating the best they can. Know that 
> I think of all of you often...haven't written much because of my own 
> journey...I am sorry if I missed out on communicating with those who are 
> struggling recently. All of you are in my heart.
> 
> I do BCR abl next week..so please keep your fingers crossed. I have more 
> anxiety about this one for some reason... My basic blood work shows some 
> changes that are in the wrong direction...hopefully things are stable in the 
> CML realm.
> 
> Will keep you posted..
> 
> Much love and 18's, Beth
> 
> -Original Message-
> From: Richard H <rbhuffm...@gmail.com>
> To: CMLHope <cmlhope@googlegroups.com>
> Sent: Sun, May 1, 2016 11:11 pm
> Subject: Re: [CMLHope] Prayers are offered.
> 
> Thank you.
> Richard
> 
>> On Saturday, April 30, 2016 at 11:29:32 AM UTC-5, wa2yyx wrote:
>> Just one thing to say Richard H. Your like the rock of Gibraltar.
>> 
>> 18's to you!
>> 
>> Marty
>> 
>>> On Sat, Apr 30, 2016 at 12:07 AM, Richard H <rbhuf...@gmail.com> wrote:
>>> I am sorry to hear about all the problems everyone is reporting.  I am 
>>> lifting prayers for healing to those with problems and for the caregivers 
>>> prayers of understanding and strength to help them be the support they want 
>>> and need to be.
>>> 
>>> I am just coasting with all my problems and trying to deal with lower 
>>> strength because of them.  I have changed a couple of Doctors because they 
>>> started practicing too far away.  They have reviewed my records and have 
>>> updated me on things that I don't remember being told about and clarified 
>>> some things that were given as side inference.  I am also adding a new 
>>> heart med and will be monitored to see if I need to change others on my 
>>> list.
>>> 
>>> 18's
>>> 
>>&g

Re: [CMLHope] Prayers are offered.

['Icandoallttc' via CMLHope]

What are the changes in your blood work if u don't mind sharing Beth?I have 
several things out of range but just slightly. 


My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On May 2, 2016, at 6:14 PM, 'Marcie Goodman' via CMLHope 
>  wrote:
> 
> Beth, yes, a long time since you've posted. Please let us know your results. 
> Sending prayers and hugs. 
> 
> Marcie
> 
> Sent from my iPhone
> 
>> On May 2, 2016, at 2:05 PM, bkbarney via CMLHope  
>> wrote:
>> 
>> Thank you Richard for your kind words and prayers. They are always so 
>> appreciated. You are such a stable presence here. I so appreciate your 
>> thoughts and help. I hope everyone is navigating the best they can. Know 
>> that I think of all of you often...haven't written much because of my own 
>> journey...I am sorry if I missed out on communicating with those who are 
>> struggling recently. All of you are in my heart.
>> 
>> I do BCR abl next week..so please keep your fingers crossed. I have more 
>> anxiety about this one for some reason... My basic blood work shows some 
>> changes that are in the wrong direction...hopefully things are stable in the 
>> CML realm.
>> 
>> Will keep you posted..
>> 
>> Much love and 18's, Beth
>> 
>> -Original Message-
>> From: Richard H 
>> To: CMLHope 
>> Sent: Sun, May 1, 2016 11:11 pm
>> Subject: Re: [CMLHope] Prayers are offered.
>> 
>> Thank you.
>> Richard
>> 
>>> On Saturday, April 30, 2016 at 11:29:32 AM UTC-5, wa2yyx wrote:
>>> Just one thing to say Richard H. Your like the rock of Gibraltar.
>>> 
>>> 18's to you!
>>> 
>>> Marty
>>> 
 On Sat, Apr 30, 2016 at 12:07 AM, Richard H  wrote:
 I am sorry to hear about all the problems everyone is reporting.  I am 
 lifting prayers for healing to those with problems and for the caregivers 
 prayers of understanding and strength to help them be the support they 
 want and need to be.
 
 I am just coasting with all my problems and trying to deal with lower 
 strength because of them.  I have changed a couple of Doctors because they 
 started practicing too far away.  They have reviewed my records and have 
 updated me on things that I don't remember being told about and clarified 
 some things that were given as side inference.  I am also adding a new 
 heart med and will be monitored to see if I need to change others on my 
 list.
 
 18's
 
 Richard H.
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>> 
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Re: [CMLHope] Prayers are offered.

['Icandoallttc' via CMLHope]

Yes Beth I miss your uplifting posts. I know we are all fighting and it gets to 
be hard, but sharing does help.  
I am doing good on Ponatinib with few side effects but the side pain I with me 
all the time.
And yes Beth waiting to get our blood results can be scary.   It always 
surprises me when the doctor walks in and all is good.  It's like I'm waiting 
for the bomb to drop. 
I go to Moffitt every three months now.  I'm still in remission. However 
leukemia can rear its ugly head ant time as we all know.  
I tend to live each day as best I can and try not to worry.  
Share with us what you can Beth and keep in touch. ❤️❤️

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On May 2, 2016, at 6:14 PM, 'Marcie Goodman' via CMLHope 
>  wrote:
> 
> Beth, yes, a long time since you've posted. Please let us know your results. 
> Sending prayers and hugs. 
> 
> Marcie
> 
> Sent from my iPhone
> 
>> On May 2, 2016, at 2:05 PM, bkbarney via CMLHope  
>> wrote:
>> 
>> Thank you Richard for your kind words and prayers. They are always so 
>> appreciated. You are such a stable presence here. I so appreciate your 
>> thoughts and help. I hope everyone is navigating the best they can. Know 
>> that I think of all of you often...haven't written much because of my own 
>> journey...I am sorry if I missed out on communicating with those who are 
>> struggling recently. All of you are in my heart.
>> 
>> I do BCR abl next week..so please keep your fingers crossed. I have more 
>> anxiety about this one for some reason... My basic blood work shows some 
>> changes that are in the wrong direction...hopefully things are stable in the 
>> CML realm.
>> 
>> Will keep you posted..
>> 
>> Much love and 18's, Beth
>> 
>> -Original Message-
>> From: Richard H 
>> To: CMLHope 
>> Sent: Sun, May 1, 2016 11:11 pm
>> Subject: Re: [CMLHope] Prayers are offered.
>> 
>> Thank you.
>> Richard
>> 
>>> On Saturday, April 30, 2016 at 11:29:32 AM UTC-5, wa2yyx wrote:
>>> Just one thing to say Richard H. Your like the rock of Gibraltar.
>>> 
>>> 18's to you!
>>> 
>>> Marty
>>> 
 On Sat, Apr 30, 2016 at 12:07 AM, Richard H  wrote:
 I am sorry to hear about all the problems everyone is reporting.  I am 
 lifting prayers for healing to those with problems and for the caregivers 
 prayers of understanding and strength to help them be the support they 
 want and need to be.
 
 I am just coasting with all my problems and trying to deal with lower 
 strength because of them.  I have changed a couple of Doctors because they 
 started practicing too far away.  They have reviewed my records and have 
 updated me on things that I don't remember being told about and clarified 
 some things that were given as side inference.  I am also adding a new 
 heart med and will be monitored to see if I need to change others on my 
 list.
 
 18's
 
 Richard H.
 -- 
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Re: [CMLHope] Prayers are offered.

['Icandoallttc' via CMLHope]

I'm sorry too.   With illness it's like taking one step forward and one step 
back.  The good thing is that we are all still stepping. 
Our stories can be someone's uplift for the day. 
Let's hear from everyone and keep our stepping stone well. 
Each day is a treasure and God will see us through the rough ones. ❤️❤️

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Apr 30, 2016, at 12:07 AM, Richard H  wrote:
> 
> I am sorry to hear about all the problems everyone is reporting.  I am 
> lifting prayers for healing to those with problems and for the caregivers 
> prayers of understanding and strength to help them be the support they want 
> and need to be.
> 
> I am just coasting with all my problems and trying to deal with lower 
> strength because of them.  I have changed a couple of Doctors because they 
> started practicing too far away.  They have reviewed my records and have 
> updated me on things that I don't remember being told about and clarified 
> some things that were given as side inference.  I am also adding a new heart 
> med and will be monitored to see if I need to change others on my list.
> 
> 18's
> 
> Richard H.
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Re: [CMLHope] Re: Zavie's Zero Club.xls

['Icandoallttc' via CMLHope]

I don't think so. We have many Christians on this list.  Thanks for your quick 
reply.   All is good.  

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Apr 29, 2016, at 12:31 AM, Richard H  wrote:
> 
> I had assumed that since this is Passover period that many are participating.
> 
> Richard H. 
> 
>> On Thursday, April 28, 2016 at 3:39:44 PM UTC-5, Icandoallttc wrote:
>> Just testing.   
>> 
>> My Motto: Faith and Pills❤️ 
>> With Jeanie 18,s Chi 
>> Dx 1/2004. CML Leukemia 
>> Started Gleevec 2/2004 
>> Started Tasigna  9/2009 
>> Started Sprycel 11/2009 
>> Started Ponatinib January 2015 
>> Dr Balducci Moffitt Cancer Center 
>> 
>> > On Apr 19, 2016, at 11:55 AM, Icandoallttc  wrote: 
>> > 
>> > 
>> > 
>> >  
>> > 
>> > 
>> > 
>> > My Motto: Faith and Pills❤️ 
>> > With Jeanie 18,s Chi 
>> > Dx 1/2004. CML Leukemia 
>> > Started Gleevec 2/2004 
>> > Started Tasigna  9/2009 
>> > Started Sprycel 11/2009 
>> > Started Ponatinib January 2015 
>> > Dr Balducci Moffitt Cancer Center
> 
> -- 
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[CMLHope] Re: Zavie's Zero Club.xls

['Icandoallttc' via CMLHope]

Just testing.  

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Apr 19, 2016, at 11:55 AM, Icandoallttc  wrote:
> 
> 
> 
> 
> 
> 
> 
> My Motto: Faith and Pills❤️
> With Jeanie 18,s Chi
> Dx 1/2004. CML Leukemia
> Started Gleevec 2/2004
> Started Tasigna  9/2009
> Started Sprycel 11/2009
> Started Ponatinib January 2015
> Dr Balducci Moffitt Cancer Center

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Re: [CMLHope] Re: Hello all

[ICANDOALLTTC via CMLHope]

Hi Skip and thanks so  much for that update!
You are truly a wonder!
This is my 12th year fighting CML so I'm just a baby hehe.
I also failed on all the tkis and was put on the newest: Ponatinib.
It is working good with little side effects.
There is only one other CML warrior on this drug: John.
Can we hear from you John?
I have had a bad side pain that the test don't show anything, but it is a  
bad pain so just have to treat it.
This pain started to get bad on Tasigna.
I had to have transfusions too on Tasigna and as you said, not a bad thing  
to go through just time consuming.
I am just thankful for each day and for our CML warriors who help us  
through the battle so we are not alone.
Have a wonderful Sunday!
Jeanie<3
 
 
In a message dated 4/17/2016 6:43:38 A.M. Eastern Daylight Time,  
shannonl.cam...@gmail.com writes:

Hi Skip  


Wow 38 yrs and such a journey you inspire me. I thought my 18yrs was long  
thanks for letting your story


thanks Shannon


On Sunday, April 17, 2016 at 5:40:25 AM UTC+10, skipd wrote:  
Well for those who may not know me, Name is Stewart Duffie  (Skip) I have 
had CML for about 38 years now.  When I first was diag in  1977 there was not 
much in the line of drugs, in fact there was none except  Myleran.  I 
survived with drug for 27 years, the Hem docs said to my GP  let his counts go 
up 
until over 100,000 (wbc) and then start myleran at 2mg  a day until it 
comes down to about 50% then one mg a day until it gets down  to about 30,000 
then 1/2 mg until about 20,000 then stop. Let the wbc drift  until until it 
gets back to over 100,000 then repeat all over again, we did  this every year 
until 27 years was up then my spleen started to act up.  Wheee there was a 
new drug would I go on the trial .. yeep Imatinib  would be my new drug It 
was not cheap, but we went on it until after about 2  years my Hem doc it was 
not working, beside he wanted me to try new drug  call Nilotinib, same 
company just stronger, so I took nilotnib until it  failed after some time. but 
we have a new drug coming down the line called  Dasatinib lets try that.  
That game so much plural Infusion they had to  quit.  
went back on Nilotinib.  I was in my 30th year with CML.  I  gues the doc 
thought it was a lost cause so he said will see you in six  months, well by 
that time my WBC. RBC, Plts, Neut, and ANC all we in the  critical stage, 
started getting blood and platelets twice week That is every  Tue received 
platetlets IV . platelets and  Fri IV  Red Blood  Cells.  The my Ferritin 
started going up until now it is over 9,000 it  should be 200 I get Desferol 
three 
time IV for it.  My Platelets are  low due to all these ddrugs over the 
years killing my bone marrow so I  cannot product plts.  Red goes down but not 
as fast. I see all of you  with CML that have such a hard time. Yet I am 
just coasting through this  feeling not to bad, have had some rought spots, but 
all in all I feel not to  bad I am getting up in years now, 
For those of you needing infusions it is not too bad, I have a PICC  Line 
in (see utube Purple PICC lines ) People donate blood and plts how  kind as I 
get single donor platelets 
Apheresis Platelets) which  take a 4 hours to give. other than cml I am 
healthy


Next I want to thank Marty and I candoallttc asking me to talk about my  
journy with CML .  Thanks so much for your interest.

On  Thursday, 14 April 2016 13:13:02 UTC-3, skipd wrote:  
I did not know about google cmlhope.  I lost yahoo a  year or so ago and 
never could get back on.  I am now back on google  and thanks to Marty all 
seems right with the world.  I have had CML  for a long time and will go off 
and on the internet depends on where my  blood and platelets are.  all that 
means is how tired I am.  I  do read all the posts when I can.  I want to say 
hi to all the long  timers and the newbies to CML.  I think someone once 
called me an  urban legend, which I am not just old and wasting the takpayers 
money.  If anyone is interested  
I would give me stats, but I am sure most of you are tired of  it..
health to all.
Skipd







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Re: [CMLHope] Get in touch with Rob to add people.

['Icandoallttc' via CMLHope]

Thanks to you Rob for helping us all these years.  
May God bless you forever and a day. 

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Apr 15, 2016, at 10:14 AM, Icandoallttc <icandoall...@aol.com> wrote:
> 
> Yahoo!! Yippie!!!  Everything is good!!! 
> Thank you too Marty!!!
> 
> My Motto: Faith and Pills❤️
> With Jeanie 18,s Chi
> Dx 1/2004. CML Leukemia
> Started Gleevec 2/2004
> Started Tasigna  9/2009
> Started Sprycel 11/2009
> Started Ponatinib January 2015
> Dr Balducci Moffitt Cancer Center
> 
>> On Apr 14, 2016, at 9:07 PM, Marty Gartenberg <wa2...@gmail.com> wrote:
>> 
>> Thank you, Jeanie and Rob
>> 
>> 18's
>> 
>> Marty
>> 
>>> On Thu, Apr 14, 2016 at 9:27 AM, 'Icandoallttc' via CMLHope 
>>> <cmlhope@googlegroups.com> wrote:
>>> 
>>> 
>>> My Motto: Faith and Pills❤️
>>> With Jeanie 18,s Chi
>>> Dx 1/2004. CML Leukemia
>>> Started Gleevec 2/2004
>>> Started Tasigna  9/2009
>>> Started Sprycel 11/2009
>>> Started Ponatinib January 2015
>>> Dr Balducci Moffitt Cancer Center
>>> 
>>> Begin forwarded message:
>>> 
>>>> From: Robert W Neill Jr <roblibe...@gmail.com>
>>>> Date: January 16, 2016 at 12:09:39 PM EST
>>>> To: icandoall...@aol.com
>>>> Subject: Re: are you there Rob? cml group
>>>> 
>>>> Thanks for your email. I posted a message on the group to update people.
>>>> 
>>>> Rob
>>>> 
>>>>> On Sat, Jan 16, 2016 at 7:27 AM,  <icandoall...@aol.com> wrote:
>>>>> Hi Rob, Our group hasn't heard from you in a while and there was a 
>>>>> question
>>>>> on who was leading the group.  I told them you were the founder and leader
>>>>> of the group but we would like to hear from you just to check in and give 
>>>>> an
>>>>> update.
>>>>> I am doing good and thank you for helping me.
>>>>> Love
>>>>> Jeanie<3
>>>> 
>>>> 
>>>> 
>>>> -- 
>>>> Robert W. Neill, Jr.
>>>> Voice/Text  601-519-0075
>>> 
>>> -- 
>>> -- 
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>> 
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Re: [CMLHope] Hello all

['Icandoallttc' via CMLHope]

Hi Skip and we love to hear how you are doing and everyone!  
So glad you are back with us. 
We are a group with loving ears and hopes for a great tomorrow.  
So keep posting.  
❤️❤️

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Apr 14, 2016, at 12:13 PM, skipd  wrote:
> 
> I did not know about google cmlhope.  I lost yahoo a year or so ago and never 
> could get back on.  I am now back on google and thanks to Marty all seems 
> right with the world.  I have had CML for a long time and will go off and on 
> the internet depends on where my blood and platelets are.  all that means is 
> how tired I am.  I do read all the posts when I can.  I want to say hi to all 
> the long timers and the newbies to CML.  I think someone once called me an 
> urban legend, which I am not just old and wasting the takpayers money.  If 
> anyone is interested
> I would give me stats, but I am sure most of you are tired of it..
> health to all.
> Skipd
> -- 
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Re: [CMLHope] Get in touch with Rob to add people.

['Icandoallttc' via CMLHope]

Yahoo!! Yippie!!!  Everything is good!!! 
Thank you too Marty!!!

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Apr 14, 2016, at 9:07 PM, Marty Gartenberg <wa2...@gmail.com> wrote:
> 
> Thank you, Jeanie and Rob
> 
> 18's
> 
> Marty
> 
>> On Thu, Apr 14, 2016 at 9:27 AM, 'Icandoallttc' via CMLHope 
>> <cmlhope@googlegroups.com> wrote:
>> 
>> 
>> My Motto: Faith and Pills❤️
>> With Jeanie 18,s Chi
>> Dx 1/2004. CML Leukemia
>> Started Gleevec 2/2004
>> Started Tasigna  9/2009
>> Started Sprycel 11/2009
>> Started Ponatinib January 2015
>> Dr Balducci Moffitt Cancer Center
>> 
>> Begin forwarded message:
>> 
>>> From: Robert W Neill Jr <roblibe...@gmail.com>
>>> Date: January 16, 2016 at 12:09:39 PM EST
>>> To: icandoall...@aol.com
>>> Subject: Re: are you there Rob? cml group
>>> 
>>> Thanks for your email. I posted a message on the group to update people.
>>> 
>>> Rob
>>> 
>>>> On Sat, Jan 16, 2016 at 7:27 AM,  <icandoall...@aol.com> wrote:
>>>> Hi Rob, Our group hasn't heard from you in a while and there was a question
>>>> on who was leading the group.  I told them you were the founder and leader
>>>> of the group but we would like to hear from you just to check in and give 
>>>> an
>>>> update.
>>>> I am doing good and thank you for helping me.
>>>> Love
>>>> Jeanie<3
>>> 
>>> 
>>> 
>>> -- 
>>> Robert W. Neill, Jr.
>>> Voice/Text  601-519-0075
>> 
>> -- 
>> -- 
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> 
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[CMLHope] John are you good?

['Icandoallttc' via CMLHope]

Hi John, 
I was wondering how you are.   We are the only ones in this group who are on 
Ponatinib.  I wanted you to know I am in remission.  I have been in this tki 
for 12 months now!!! Can you believe it
Don't have a lot of get up and go but hanging in there. 
Kids have a vacation for me in May so I'm hoping to be able to go. 
Bless you and look forward to your reply. 

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

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[CMLHope] Get in touch with Rob to add people.

['Icandoallttc' via CMLHope]

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

Begin forwarded message:

> From: Robert W Neill Jr 
> Date: January 16, 2016 at 12:09:39 PM EST
> To: icandoall...@aol.com
> Subject: Re: are you there Rob? cml group
> 
> Thanks for your email. I posted a message on the group to update people.
> 
> Rob
> 
>> On Sat, Jan 16, 2016 at 7:27 AM,   wrote:
>> Hi Rob, Our group hasn't heard from you in a while and there was a question
>> on who was leading the group.  I told them you were the founder and leader
>> of the group but we would like to hear from you just to check in and give an
>> update.
>> I am doing good and thank you for helping me.
>> Love
>> Jeanie<3
> 
> 
> 
> -- 
> Robert W. Neill, Jr.
> Voice/Text  601-519-0075

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Fwd: [CMLHope] Zavie Zero Club Numbers - MARTY

['Icandoallttc' via CMLHope]

No Susie I didn't reach remission on Gleevec.  
My number is 1308. Read the forward. 

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

Begin forwarded message:

> From: Icandoallttc <icandoall...@aol.com>
> Date: April 1, 2016 at 5:38:29 PM EDT
> To: "cmlhope@googlegroups.com" <cmlhope@googlegroups.com>
> Subject: Re: [CMLHope] Zavie Zero Club Numbers  - MARTY
> 
> Greenie, on the list the #48 was skipped.
> Did you download the list?
> 
> My Motto: Faith and Pills❤️
> With Jeanie 18,s Chi
> Dx 1/2004. CML Leukemia
> Started Gleevec 2/2004
> Started Tasigna  9/2009
> Started Sprycel 11/2009
> Started Ponatinib January 2015
> Dr Balducci Moffitt Cancer Center
> 
>> On Apr 1, 2016, at 4:44 PM, 'Icandoallttc' via CMLHope 
>> <cmlhope@googlegroups.com> wrote:
>> 
>> 
>> https://www.mail-archive.com/cmlhope%40googlegroups.com/msg09462.html
>> Think you are #48 greenie
>> 
>> 
>>> On Apr 1, 2016, at 3:37 PM, 'Icandoallttc' via CMLHope 
>>> <cmlhope@googlegroups.com> wrote:
>>> 
>>> https://www.mail-archive.com/search?l=cmlhope@googlegroups.com=subject:%22Re%5C%3A+%5C%5BCMLHope%5C%5D+Finally+made+it+to+00.00+after+6+years%22=newest
>>> My number is 1308
>>> I found franks 1115
>>> 
>>> 
>>>> On Apr 1, 2016, at 9:53 AM, ICANDOALLTTC via CMLHope 
>>>> <cmlhope@googlegroups.com> wrote:
>>>> 
>>>> Hi I did receive the picture and list.
>>>> You have to go down to the very end to see the picture.
>>>> Thanks Marty.
>>>>  
>>>> In a message dated 4/1/2016 7:42:50 A.M. Eastern Daylight Time, 
>>>> hol...@iinet.net.au writes:
>>>> Zavie Zero Club Numbers
>>>> 
>>>>  
>>>> 
>>>> Hi Marty
>>>> 
>>>>  
>>>> 
>>>> Wow !!
>>>> 
>>>>  
>>>> 
>>>> Thank you for the list  - will prove helpful – What a wonderful gift
>>>> 
>>>>  
>>>> 
>>>> List did not go to # 826
>>>> 
>>>>  
>>>> 
>>>> Only to # 403
>>>> 
>>>>  
>>>> 
>>>> No – I did not receive an attachment of Zavie in the Magazine
>>>> 
>>>>  
>>>> 
>>>> Would be delighted to receive so I can post to others on the new site
>>>> 
>>>>  
>>>> 
>>>> We are being successful with finding people (not all but enough to have 
>>>> dialogue)
>>>> 
>>>>  
>>>> 
>>>> Anyone wishing to join the Social Facebook page do not hesitate
>>>> 
>>>>  
>>>> 
>>>> Marty I will email you privately – perhaps the attachment and list would 
>>>> be easier to send to me
>>>> 
>>>>  
>>>> 
>>>> 18’s
>>>> 
>>>>  
>>>> 
>>>> Yes I use now
>>>> 
>>>>  
>>>> 
>>>> Love to all
>>>> 
>>>>  
>>>> 
>>>> Thank you for your support with connecting and reconnecting to others
>>>> 
>>>>  
>>>> 
>>>> Sue Hurt
>>>> 
>>>> #1197
>>>> 
>>>>   
>>>> 
>>>>  
>>>> 
>>>>  
>>>> 
>>>> -- 
>>>> -- 
>>>> [CMLHope]
>>>> A support group of http://cmlhope.com
>>>> -
>>>>  
>>>> You received this message because you are subscribed to the Google Groups 
>>>> "CMLHope" group.
>>>> To post to this group, send email to CMLHope@googlegroups.com
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>>>> For more options, visit this group at 
>>>> http://groups.google.com/group/CMLHope
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>>>> email to cmlhope+unsubscr...@googlegroups.com.
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Re: [CMLHope] Your Mom

['Icandoallttc' via CMLHope]

Hi Marty and good advice. I never realized that you took so many pills. God 
bless you and keep you always.  
Millie used to tell me how many pills she had to take at one time. She fought 
so hard and it was such a brave warrior and I still miss her and I know the 
group does too. 
We all have our burdens and must fight each burden as it comes. But as a group 
we can help each other to the end. 
You are a great warrior and a great blessing to all of us. Thank you so much 
for your uplifting.

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Apr 7, 2016, at 3:14 PM, Marty Gartenberg  wrote:
> 
> 
> Marty Gartenberg 
> 
> 3:04 PM (7 minutes ago)
> 
> 
> 
> 
> 
> Oh Suzieq,
> 
> I have a lot to comment on... So you say that her window was open and no one 
> knows who opened it? Well now that you mention it I do know. It was because 
> GOD wanted to give her some refreshing breaths of good fresh air. You know 
> that GOD works in mysterious ways. Do you have any other explanation?
> 
> Something you need to learn:
> 
> Don't mess with grumpy old women because they have already gone thought it 
> you have just started.
> 
> And finally, Do wish my parents were still here. I would have told them how 
> much I love them again.
> 
> Well actually one more thing. If at all possible try not to keep your mom in 
> bed the whole day, even if she may be in pain, and if she still can't walk 
> just have her put into a wheel chair. The world around her is an open book so 
> that she needs to look at. Marvelous things happen when she "reads through 
> the pages, maybe she will slack off on being grumpy?
> 
> Just some words of wisdom from me to her. Please don't forget to read her 
> that prayer I sent to you for her.
> "A Patients Prayer" every day as I also did.
> 
> Remember, Mom's are very special.
> 
> 18's
> Marty
> 
> Marty 
> 
> On Thu, Apr 7, 2016 at 12:48 PM, Suzieq  wrote:
>>> Thanks to all of you for your kind words and prayers and encouragement.  
>>> And, Marty & Jeannie, I told me Mom this very thing not too long ago,  that 
>>> God is the keeper of our time & our days are numbered.  Only He knows how 
>>> long we have here.  She is doing so, so.  Has some days that are good,  
>>> then days like this morning where she hurts all over and hollers when you 
>>> just touch her. Complains about not being able to turn over or get 
>>> comfortable or that she's twisted, etc.  I got up this morning and when I 
>>> came in here, she's sound asleep but the window by her bed was open (it's 
>>> one of those roll out type windows and the handle/roll out lever is up by 
>>> her.  When she woke up later and I told her the window was opened when I 
>>> got up,  she said she didn't know how it got opened???  So,  now we must 
>>> have the "not me ghost" living here with us like I had at home when my son 
>>> was little. She has her "grumpy" days where I can't do anything right,  but 
>>> o well,  we will survive. :)  I pray a lot asking God to help me be patient 
>>> and ignore the grumpiness and complaints.  I would probably be the same if 
>>> all I could do in life was lay in a bed all day and night. God bless 
>>> everyone.
>> 
>> Keep Looking Up,
>> 
>> Suzieq 
>> -- 
>> -- 
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> 
>  Reply
>  Forward
>   
> Click here to Reply or Forward
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Re: [CMLHope] Re: An update

['Icandoallttc' via CMLHope]

Hi Sue
Good to hear from you. 
Yes I think you and I were diagnosed the same year. This is my 12th year 
fighting leukemia. 
I had to change medicines three times. My last Tki is Ponatinib.   This is my 
fourth Tki and I find it to be one of the best I have taken. I am now in 
remission thank you Jesus!!!
We have been together in this fight for a long time. Thank you so much for 
being a friend in deed. 
Being a caregiver is going to be hard but it is also going to be very 
spiritual. You will find the strength you never knew you had to help your mom. 
My mom live to be 87 and she fought so hard to live. I loved her very much and 
I still miss her very much but I know we all have to make that journey into 
Heaven. 
Take care of yourself as you care for your mom and always know we are here for 
you. 
Check your mom's mad at sons to see if some of these could be causing a 
problem. This sometimes happens when we are taking different medicines. 
God bless you and make every day count for you and your family. 

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Apr 7, 2016, at 1:09 PM, Suzieq  wrote:
> 
> 
> 
> On Thursday, April 7, 2016 at 12:48:40 PM UTC-4, Suzieq wrote:
>> 
>>> Thanks to all of you for your kind words and prayers and encouragement.  
>>> And, Marty & Jeannie, I told me Mom this very thing not too long ago,  that 
>>> God is the keeper of our time & our days are numbered.  Only He knows how 
>>> long we have here.  She is doing so, so.  Has some days that are good,  
>>> then days like this morning where she hurts all over and hollers when you 
>>> just touch her. Complains about not being able to turn over or get 
>>> comfortable or that she's twisted, etc.  I got up this morning and when I 
>>> came in here, she's sound asleep but the window by her bed was open (it's 
>>> one of those roll out type windows and the handle/roll out lever is up by 
>>> her.  When she woke up later and I told her the window was opened when I 
>>> got up,  she said she didn't know how it got opened???  So,  now we must 
>>> have the "not me ghost" living here with us like I had at home when my son 
>>> was little. She has her "grumpy" days where I can't do anything right,  but 
>>> o well,  we will survive. :)  I pray a lot asking God to help me be patient 
>>> and ignore the grumpiness and complaints.  I would probably be the same if 
>>> all I could do in life was lay in a bed all day and night. God bless 
>>> everyone.
>> 
>> Keep Looking Up,
>> 
>> Suzieq 
> 
> -- 
> -- 
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Re: [CMLHope] Re: An update

['Icandoallttc' via CMLHope]

Thank you Marty and yes I believe Only God knows how long we have to live.  
Take each day as it comes and live it fully.  

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Apr 6, 2016, at 9:41 AM, Marty Gartenberg  wrote:
> 
> You know that I usually look at all of the posts that come through but it was 
> something that Beth posted, and I have been thinking about it, but all the 
> rest of all of you as well. All of everyone here are such good hearted and 
> compassionate as well as caring people and it just seems that we must come 
> from an extended large group of family thrown together. 
> 
> And this is for your 87 year old mom... see below
> 
> But first, A little story for you:
> 
> It was 15 years ago that a close friend of mine was in the late stages of 
> having Alzheimer's disease. However his wife never gave up on him. He was 
> still lucid up until about two years ago. Most of his doctors mentioned that 
> he probably had only a week or to to live. So I told his wife that this also 
> happened to me a couple of times but I am still alive, and there were a few 
> of my doctors that have already passed on.
> 
> I came to the conclusion that only GOD will take someone when it is their 
> time. So, this man with  Alzheimer's proved them wrong. Remember thirteen 
> good years and two that were not exactly the best for him.
> My wife and myself just attended his funeral this past week.
> 
> So what does this tell everyone? You already know but how long someone lives 
> is what makes each and every moment count.
> 
> This is for your perishes mom... 
> 
>  A PATIENT’S PRAYER
>  
> Eternal GOD, source of healing, out of my distress I call upon you. Help me 
> to sense your presence at this difficult time. You have already sent me gifts 
> of your goodness: The skill of my physician, the concern of others who help 
> me, the compassion of those I love, and who love me.
>  
> I pray that I may be worthy of all these, today and in the days to come. Help 
> me to banish all bitterness; let not despair overcome me. Grant me patience 
> when the hours are heavy; give me courage whenever there is hurt or 
> disappointment.
>  
> Keep me trustful in your love, O GOD. Give me strength for today, and hope 
> for tomorrow. To your loving hands I commit my spirit when asleep and when 
> awake. You are with me; I shall not fear. Help me, O GOD, in my time of need.
> 18's
> Marty
>  
> 
>> On Tue, Apr 5, 2016 at 10:33 PM, bkbarney via CMLHope 
>>  wrote:
>> Dear Suzieq,
>> 
>> Thinking of you with your momplease try to remember to take care of 
>> yourself while taking care of others...our hearts of with you...warmest 
>> regards, Beth. 
>> 
>> 
>> -Original Message-
>> From: Shannon L 
>> To: CMLHope 
>> Sent: Tue, Apr 5, 2016 4:47 am
>> Subject: [CMLHope] Re: An update
>> 
>> Hi Suzieq
>> 
>> Sorry to hear the news of your Mum and also hope your readings stay low or 0 
>> take care
>> 
>> Best wished Shannon Levanos
>> 
>>> On Tuesday, April 5, 2016 at 4:11:37 AM UTC+10, Suzieq wrote:
>>> Hello CML survivors:  just wanted to tell everyone my recent life changes.  
>>> I had my check up back the end of January & it showed a .01% positive.  I 
>>> didn't freak out, after 12 years, I expect this up & down roller coaster. 
>>> As my doctor keeps telling me, that's a very minute number & you can live a 
>>> long life with that number.
>>> The big change came about three weeks ago. My 87 yr. old mother was dx'ed 
>>> with Lymphoma of the Red Blood Cells. She quit all treatment & asked to 
>>> come home & let nature take its course. So, I am here in Florida being her 
>>> caregiver for now. I find it ironic that her brother had Multiple Myeloma, 
>>> (died in late 90's), I have CML, & now Mom has Lymphoma.  Could there be a 
>>> pattern unfolding here?? Makes one wonder, doesn't it! She also has an 
>>> autoimmune disease of her platelets. We are just trying to keep her 
>>> comfortable as possible. So far, she's just weak. Doesn't eat enough to 
>>> keep a bird alive. Not sure how much longer she will have, but we are 
>>> making every moment count.
>>> Thank you, 
>>> Suzieq
>> 
>> -- 
>> -- 
>> [CMLHope]
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>> -
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Re: [CMLHope] To Susan Zimmerman

['Icandoallttc' via CMLHope]

Hi Kate,
I was on Gleevec for 5 years and it can cause every kind of rash.  I had bad 
painful rash and boils.  I found you just have to treat the side effects as 
best you can. I was given hydrocortizone cream and used home treatments also. 
One side effect can end and then another will pop up.  Just be patient and try 
to get relief when you can. God bless you. 

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Apr 5, 2016, at 11:14 PM, bkbarney via CMLHope  
> wrote:
> 
> Dear Kate,
> 
> Sorry it has taken a a little while for me to write to you, but I want to 
> welcome you to our groupalong with all the others here, it is a very 
> special place to give and receive support...so do stay close, and hopefully, 
> we can all continue to learn from one another...regarding your question..I 
> was diagnosed at 48, and several others here are younger than me, so I am not 
> sure if your skin conditions are related to age verses medication side 
> effects or/ and toxicity...I know that sometimes changing doses helped as 
> long as CML is managed well...also, sometimes, if it is in response to a new 
> medication uptake it can be an allergic response, or even an auto immune 
> response..which sometimes is helped with short term steroids..of course they 
> can cause their own side effects..as it is medication induced, the rashes, 
> raised bumps, even large red raised look like acne but are not...areas, are a 
> part of the side effect profiles of several of the cml meds...I would keep 
> working with your doc around this, don't hesitate to ask questions, like has 
> he or she ever seen this before with gleevec etc...??Has it been successfully 
> been treated on others???with what???
> 
> Take care, my best, 18
> s
> 
> 
> Beth
> 
> 
> -Original Message-
> From: kathy walls 
> To: cmlhope 
> Sent: Tue, Mar 29, 2016 12:42 pm
> Subject: Re: [CMLHope] To Susan Zimmerman
> 
> Hi all,
> I am real new to the CML world only 14 months out from diagnosis. I have 
> learned a lot from reading posts here. It's been helpful.  My dr is a CML dr 
> and I've had very good results medicine wise but he has no answers for side 
> effects Specially  bad acne break outs. All he says it's because I'm on 
> the young side to have developed CML.  I'm almost 57. Been seeing a 
> dermatologist but results have been minimal. Anyone out there got any 
> suggestions? I'm taking 200mg daily of gleevec. Was on 400 of tasigna which 
> was hell on earth. Anything would be helpful.
> 18's
> Kate
> 
> Sent from my iPhone
> 
> On Mar 28, 2016, at 9:51 PM, 'Susan Zimmerman' via CMLHope 
>  wrote:
> 
> Marcie, 
> So glad the gall bladder settled down. I give our God ALL the credit for 
> that! So sorry to hear about your husband's issues as well. Is he doing ok 
> now? Not sposed to take turns at the hospital. How will you ever get in a 
> vacation? Blessings at Passover time.
> Love, 
> 
> Susan F. Zimmerman
> "All who humble themselves before the Lord shall be given every blessing, and 
> shall have wonderful peace." Ps.37:11
> 
> 
> On Saturday, March 26, 2016 'Marcie Goodman' via CMLHope 
>  wrote:
> 
> Thanks, Susan. I missed an appointment for blood labs because my husband was 
> in the hospital and having complications from his medical issues. No one to 
> blame but myself. 
> 
> The pain on side has gone so at least for now I'm not going to worry about 
> it. I'll be following up this week with my doctor for more labs and tests. 
> 
> So glad you are doing well. This is the season for miracles and I wish you 
> and Roy and the family a happy and very blessed Easter. 
> 
> Marcie 
> 
> Sent from my iPhone
> 
> On Mar 24, 2016, at 5:25 PM, 'Susan Zimmerman' via CMLHope 
>  wrote:
> 
> So sorry to hear about a hospital stay. These are not places we want to hang 
> outlow red cells does not sound good, but I'm sure you have great docs. 
> Was that low a gradual thing or quick? Seems they should or could have caught 
> it before you bottomed out if it was gradual.
> I sure hope it turns out the gallbladder is fine. He still heals today so 
> I'll pray! You could have gotten time off work in an easier way, I'm sure.
> Hope you gets lots of extra tlc and consider this part of it!!!  You are 
> special to me and many others on here!  Keep us updated!!!
> 18's and fight on,
> Susan F. Zimmerman
> "All who humble themselves before the Lord shall be given every blessing, and 
> shall have wonderful peace." Ps.37:11
> 
> 
> On Thursday, March 24, 2016 'Marcie Goodman' via CMLHope 
>  wrote:
> 
> Susan, as always, I have you and Roy in my prayers. Please let us know how 
> your test 

Re: [CMLHope] ZAVIE ZERO CLUB NUMBER

['Icandoallttc' via CMLHope]

 709 Karen Sos   
>> 710 Peter StickFrom Jerry. BMS trial
>> 711 Suzanne Festa  CN From Asian
>> 712 Chloe3 yrs old
>> 713 Morgan Blackford   6 yrs old, Michelle is mom
>> 714 Eleanore Perkins   
>> 715 Debra Moretz   
>> 716 Jason Nagy   
>> 717 Suzanne Festa   
>> 718 Ron Lacy   
>> 719 Masoud Seyedjalali   From Asian site
>> 720 VickieFrom Jerry's site
>> 721 Geeta
>> 722 Mary Hooker Bebton LA From PLWC ASCO site
>> 723 VictoriaFrom Jerry's site
>> 724 Eoghan Gallagher Strokestown IR From European site
>> 725 Sultan   FR From Jerry's site
>> 726 Derek Bergmann  UK From European site.
>> 727 Richard Troxel Newhall CA 
>> 728 Sergio Garcia Orange County CA 
>> 729 Susan Dale  FR From BMT in France
>> 730 Jim Simpson Winnipeg MA From European site
>> 731 Denis Culligan Dublin IR From European site
>> 732 Tonya  Atlanta GA 
>> 733 Miles Levim   BMT
>> 734 Dee (Doreen) Hedman Duluth MI 
>> 735 Marilynn
>> 736 SamEuropean site.
>> 737 Barbara Marfleet   European site.
>> 738 Marlene Curby   Low ANC. On Asian list
>> 739 Marcia   ON Marcia is wife. From Jerry'e site.
>> 740 Joyce Davis   European site.
>> 741 David Landry   Debbis is his mom
>> 742 Stuart is husband. Eur. Site
>> 743 Ian Prudence  UK Kathy is wife. From Europ site
>> 744 Melinda Pierce   
>> 745 Dawn Cigainero Hooks TX Husband is Chris. From ACOR
>> 746 Nathalie Doyle Contz les Bains FR Had a baby
>> 747 Betsy Carlin Holmdel NJ Husband is James
>> 748 Mike Siegel Cyclist. Newspaer Article  
>> 749 m
>> 750 Eva Brubaker Upland CA On BMS drug
>> 751 Michael Herring Atlanta GA Retired military. Back to school. Eur. Site.
>> 752 Linda Scukins   European site
>> 753 Paul Codrington Minster, Isle of Sheppey UK 
>> 754 Carolyn  Bullard   BMT
>> 755 Tommy  Tbone  From Jerry's site. BMT relapse
>> 756 Nancy Chando Hurley NY 
>> 757 Mark Pardy New Milton, Hamp UK From European
>> 758 Celsey Daniels Calgary AB From Jerry
>> 759 Tom Cripps   BMS. Wife is Teresa
>> 760 TDBMS From Jerry
>> 761 Nadine Awde   Asian
>> 762 Rosaura Santa Orlasndo FL Eur. Site
>> 763 Jose N
>> 764 Teresa Tadros Tallahasse FL 
>> 765 Daniella  Whittington  UK Had a baby.
>> 766 mctxAfro American
>> 767 Bob
>> 768 Julie Breton Mascouche QC 
>> 769 Stephanie  Canton NY 
>> 770 Jacqueline
>> 771 Adam
>> 772 Dan
>> 773 Philip Kaplan  NY Had a BMT. 16oct03
>> 774 Alain Branchereau  Frankfurt Germany From Asian
>> 775 Amanda Harris  MI From Asian
>> 776 Sam Blood   From European
>> 777 Bernard Davidoff   From Asian
>> 778 Eugenea Bouchia   From Asian. Genie See # 113
>> 779 Krithika Adimoolan   Asian
>> 780 MichaelMUD 5 yrs ago. Great shape
>> 781 JonathanMom is Fran
>> 782 Steen Langeland  dk 
>> 783 David Gulledge Birmingham Alabama Ann Jessup -Fiancee David has CML
>> 784 Teoh Poh Tiong  Singapore Malysia BMT relapse, PT on chat
>> 785 Rodney Cole Halifax NS Turtle
>> 786 Gordon Crawford Crewe, Cxheshire UK Did a stem cell collection
>> 787 Dr. Shital Kiran Bangalore India Wants to father a child
>> 788 Gay Bratton   Turtle - Dec 99
>> 789 Brenda Morelli   
>> 790 Carol Salmon   Dad on BMS
>> 791 Kit Yong Houston TX From Asian site
>> 792 Andreas Shattler Toronto ON 
>> 793 Libby Scrivner Mobile AL 
>> 794 Christine Finsand Chatfield MN 
>> 795 Debbie Coopwood Tuscon AZ From Druke Tribute Album
>> 796 Ruth McIntosh   From Asian. On AMN107
>> 797 Gwen Nowland Victoria BC Via BMT-18NOV03 
>> 798 Annie Kennedy Edinburgh UK Euro site
>> 799 David Wolovitz Glem Mills PA 
>> 800 Jerry Mayfield   
>> 801 Judy J   Jerry's site
>> 802 Ricky Zhao Shanghai CH 
>> 803 Nick
>> 804 Jim Carlson   
>> 805 Barbara Meunier   
>> 806 Kyle Hoover   Wiffe Marge.  had BMT, relapse, Gleevec
>> 807 Erin Zammett New York NY Editor for Glamour mag
>> 808 Mark Sharp  WA BMT. Wife Katrina
>> 809 Meghann Bell   
>> 810 DavidUK site. In trial with
>> 811 Kay Tweety  MI Black lady
>> 812 Ron Groves   From Jerry's site
>> 813 Fjohn
>> 814 Tom  Green Bay WI From CML Hope
>> 815 Pat Reynolds Lynnville TN via PCR
>> 816 Tommy Cleaver Winchester VA Mom is Suzan Schabo
>> 817 Craig Cooper  UK wife is Maria
>> 818 Andrew   AU European site.
>> 819 John Thompson Murietta CA 
>> 820 Angela Tyrell   Eur. Site.
>> 821 Geoff Thomas  UK BMT. Football star.
>> 822 Siri Jinadasa Mo

Re: [CMLHope] Zavie Zero Club Numbers - MARTY

['Icandoallttc' via CMLHope]

Greenie, on the list the #48 was skipped.
Did you download the list?

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Apr 1, 2016, at 4:44 PM, 'Icandoallttc' via CMLHope 
> <cmlhope@googlegroups.com> wrote:
> 
> 
> https://www.mail-archive.com/cmlhope%40googlegroups.com/msg09462.html
> Think you are #48 greenie
> 
> 
>> On Apr 1, 2016, at 3:37 PM, 'Icandoallttc' via CMLHope 
>> <cmlhope@googlegroups.com> wrote:
>> 
>> https://www.mail-archive.com/search?l=cmlhope@googlegroups.com=subject:%22Re%5C%3A+%5C%5BCMLHope%5C%5D+Finally+made+it+to+00.00+after+6+years%22=newest
>> My number is 1308
>> I found franks 1115
>> 
>> 
>>> On Apr 1, 2016, at 9:53 AM, ICANDOALLTTC via CMLHope 
>>> <cmlhope@googlegroups.com> wrote:
>>> 
>>> Hi I did receive the picture and list.
>>> You have to go down to the very end to see the picture.
>>> Thanks Marty.
>>>  
>>> In a message dated 4/1/2016 7:42:50 A.M. Eastern Daylight Time, 
>>> hol...@iinet.net.au writes:
>>> Zavie Zero Club Numbers
>>> 
>>>  
>>> 
>>> Hi Marty
>>> 
>>>  
>>> 
>>> Wow !!
>>> 
>>>  
>>> 
>>> Thank you for the list  - will prove helpful – What a wonderful gift
>>> 
>>>  
>>> 
>>> List did not go to # 826
>>> 
>>>  
>>> 
>>> Only to # 403
>>> 
>>>  
>>> 
>>> No – I did not receive an attachment of Zavie in the Magazine
>>> 
>>>  
>>> 
>>> Would be delighted to receive so I can post to others on the new site
>>> 
>>>  
>>> 
>>> We are being successful with finding people (not all but enough to have 
>>> dialogue)
>>> 
>>>  
>>> 
>>> Anyone wishing to join the Social Facebook page do not hesitate
>>> 
>>>  
>>> 
>>> Marty I will email you privately – perhaps the attachment and list would be 
>>> easier to send to me
>>> 
>>>  
>>> 
>>> 18’s
>>> 
>>>  
>>> 
>>> Yes I use now
>>> 
>>>  
>>> 
>>> Love to all
>>> 
>>>  
>>> 
>>> Thank you for your support with connecting and reconnecting to others
>>> 
>>>  
>>> 
>>> Sue Hurt
>>> 
>>> #1197
>>> 
>>>   
>>> 
>>>  
>>> 
>>>  
>>> 
>>> -- 
>>> -- 
>>> [CMLHope]
>>> A support group of http://cmlhope.com
>>> -
>>>  
>>> You received this message because you are subscribed to the Google Groups 
>>> "CMLHope" group.
>>> To post to this group, send email to CMLHope@googlegroups.com
>>> To unsubscribe from this group, send email to 
>>> cmlhope-unsubscr...@googlegroups.com
>>> For more options, visit this group at http://groups.google.com/group/CMLHope
>>> --- 
>>> You received this message because you are subscribed to the Google Groups 
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>>> email to cmlhope+unsubscr...@googlegroups.com.
>>> For more options, visit https://groups.google.com/d/optout.
>>> -- 
>>> -- 
>>> [CMLHope]
>>> A support group of http://cmlhope.com
>>> -
>>>  
>>> You received this message because you are subscribed to the Google Groups 
>>> "CMLHope" group.
>>> To post to this group, send email to CMLHope@googlegroups.com
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>>> cmlhope-unsubscr...@googlegroups.com
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>>> --- 
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>> -- 
>> -- 
>> [CMLHope]
>> A support group of http://cmlhope.com
>> --

Re: [CMLHope] Zavie Zero Club Numbers - MARTY

['Icandoallttc' via CMLHope]

https://www.mail-archive.com/cmlhope%40googlegroups.com/msg09462.html
Think you are #48 greenie


> On Apr 1, 2016, at 3:37 PM, 'Icandoallttc' via CMLHope 
> <cmlhope@googlegroups.com> wrote:
> 
> https://www.mail-archive.com/search?l=cmlhope@googlegroups.com=subject:%22Re%5C%3A+%5C%5BCMLHope%5C%5D+Finally+made+it+to+00.00+after+6+years%22=newest
> My number is 1308
> I found franks 1115
> 
> 
>> On Apr 1, 2016, at 9:53 AM, ICANDOALLTTC via CMLHope 
>> <cmlhope@googlegroups.com> wrote:
>> 
>> Hi I did receive the picture and list.
>> You have to go down to the very end to see the picture.
>> Thanks Marty.
>>  
>> In a message dated 4/1/2016 7:42:50 A.M. Eastern Daylight Time, 
>> hol...@iinet.net.au writes:
>> Zavie Zero Club Numbers
>> 
>>  
>> 
>> Hi Marty
>> 
>>  
>> 
>> Wow !!
>> 
>>  
>> 
>> Thank you for the list  - will prove helpful – What a wonderful gift
>> 
>>  
>> 
>> List did not go to # 826
>> 
>>  
>> 
>> Only to # 403
>> 
>>  
>> 
>> No – I did not receive an attachment of Zavie in the Magazine
>> 
>>  
>> 
>> Would be delighted to receive so I can post to others on the new site
>> 
>>  
>> 
>> We are being successful with finding people (not all but enough to have 
>> dialogue)
>> 
>>  
>> 
>> Anyone wishing to join the Social Facebook page do not hesitate
>> 
>>  
>> 
>> Marty I will email you privately – perhaps the attachment and list would be 
>> easier to send to me
>> 
>>  
>> 
>> 18’s
>> 
>>  
>> 
>> Yes I use now
>> 
>>  
>> 
>> Love to all
>> 
>>  
>> 
>> Thank you for your support with connecting and reconnecting to others
>> 
>>  
>> 
>> Sue Hurt
>> 
>> #1197
>> 
>>   
>> 
>>  
>> 
>>  
>> 
>> -- 
>> -- 
>> [CMLHope]
>> A support group of http://cmlhope.com
>> -
>>  
>> You received this message because you are subscribed to the Google Groups 
>> "CMLHope" group.
>> To post to this group, send email to CMLHope@googlegroups.com
>> To unsubscribe from this group, send email to 
>> cmlhope-unsubscr...@googlegroups.com
>> For more options, visit this group at http://groups.google.com/group/CMLHope
>> --- 
>> You received this message because you are subscribed to the Google Groups 
>> "CMLHope" group.
>> To unsubscribe from this group and stop receiving emails from it, send an 
>> email to cmlhope+unsubscr...@googlegroups.com.
>> For more options, visit https://groups.google.com/d/optout.
>> -- 
>> -- 
>> [CMLHope]
>> A support group of http://cmlhope.com
>> -
>>  
>> You received this message because you are subscribed to the Google Groups 
>> "CMLHope" group.
>> To post to this group, send email to CMLHope@googlegroups.com
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>> For more options, visit this group at http://groups.google.com/group/CMLHope
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>> For more options, visit https://groups.google.com/d/optout.
> -- 
> -- 
> [CMLHope]
> A support group of http://cmlhope.com
> -
>  
> You received this message because you are subscribed to the Google Groups 
> "CMLHope" group.
> To post to this group, send email to CMLHope@googlegroups.com
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Re: [CMLHope] Zavie Zero Club Numbers - MARTY

['Icandoallttc' via CMLHope]

If you know the date greenie you can search the archive to find your number.  



> On Apr 1, 2016, at 3:37 PM, 'Icandoallttc' via CMLHope 
> <cmlhope@googlegroups.com> wrote:
> 
> https://www.mail-archive.com/search?l=cmlhope@googlegroups.com=subject:%22Re%5C%3A+%5C%5BCMLHope%5C%5D+Finally+made+it+to+00.00+after+6+years%22=newest
> My number is 1308
> I found franks 1115
> 
> 
>> On Apr 1, 2016, at 9:53 AM, ICANDOALLTTC via CMLHope 
>> <cmlhope@googlegroups.com> wrote:
>> 
>> Hi I did receive the picture and list.
>> You have to go down to the very end to see the picture.
>> Thanks Marty.
>>  
>> In a message dated 4/1/2016 7:42:50 A.M. Eastern Daylight Time, 
>> hol...@iinet.net.au writes:
>> Zavie Zero Club Numbers
>> 
>>  
>> 
>> Hi Marty
>> 
>>  
>> 
>> Wow !!
>> 
>>  
>> 
>> Thank you for the list  - will prove helpful – What a wonderful gift
>> 
>>  
>> 
>> List did not go to # 826
>> 
>>  
>> 
>> Only to # 403
>> 
>>  
>> 
>> No – I did not receive an attachment of Zavie in the Magazine
>> 
>>  
>> 
>> Would be delighted to receive so I can post to others on the new site
>> 
>>  
>> 
>> We are being successful with finding people (not all but enough to have 
>> dialogue)
>> 
>>  
>> 
>> Anyone wishing to join the Social Facebook page do not hesitate
>> 
>>  
>> 
>> Marty I will email you privately – perhaps the attachment and list would be 
>> easier to send to me
>> 
>>  
>> 
>> 18’s
>> 
>>  
>> 
>> Yes I use now
>> 
>>  
>> 
>> Love to all
>> 
>>  
>> 
>> Thank you for your support with connecting and reconnecting to others
>> 
>>  
>> 
>> Sue Hurt
>> 
>> #1197
>> 
>>   
>> 
>>  
>> 
>>  
>> 
>> -- 
>> -- 
>> [CMLHope]
>> A support group of http://cmlhope.com
>> -
>>  
>> You received this message because you are subscribed to the Google Groups 
>> "CMLHope" group.
>> To post to this group, send email to CMLHope@googlegroups.com
>> To unsubscribe from this group, send email to 
>> cmlhope-unsubscr...@googlegroups.com
>> For more options, visit this group at http://groups.google.com/group/CMLHope
>> --- 
>> You received this message because you are subscribed to the Google Groups 
>> "CMLHope" group.
>> To unsubscribe from this group and stop receiving emails from it, send an 
>> email to cmlhope+unsubscr...@googlegroups.com.
>> For more options, visit https://groups.google.com/d/optout.
>> -- 
>> -- 
>> [CMLHope]
>> A support group of http://cmlhope.com
>> -
>>  
>> You received this message because you are subscribed to the Google Groups 
>> "CMLHope" group.
>> To post to this group, send email to CMLHope@googlegroups.com
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>> cmlhope-unsubscr...@googlegroups.com
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>> --- 
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>> email to cmlhope+unsubscr...@googlegroups.com.
>> For more options, visit https://groups.google.com/d/optout.
> -- 
> -- 
> [CMLHope]
> A support group of http://cmlhope.com
> -
>  
> You received this message because you are subscribed to the Google Groups 
> "CMLHope" group.
> To post to this group, send email to CMLHope@googlegroups.com
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Re: [CMLHope] Zavie Zero Club Numbers - MARTY

['Icandoallttc' via CMLHope]

https://www.mail-archive.com/search?l=cmlhope@googlegroups.com=subject:%22Re%5C%3A+%5C%5BCMLHope%5C%5D+Finally+made+it+to+00.00+after+6+years%22=newest
My number is 1308
I found franks 1115


> On Apr 1, 2016, at 9:53 AM, ICANDOALLTTC via CMLHope 
> <cmlhope@googlegroups.com> wrote:
> 
> Hi I did receive the picture and list.
> You have to go down to the very end to see the picture.
> Thanks Marty.
>  
> In a message dated 4/1/2016 7:42:50 A.M. Eastern Daylight Time, 
> hol...@iinet.net.au writes:
> Zavie Zero Club Numbers
> 
>  
> 
> Hi Marty
> 
>  
> 
> Wow !!
> 
>  
> 
> Thank you for the list  - will prove helpful – What a wonderful gift
> 
>  
> 
> List did not go to # 826
> 
>  
> 
> Only to # 403
> 
>  
> 
> No – I did not receive an attachment of Zavie in the Magazine
> 
>  
> 
> Would be delighted to receive so I can post to others on the new site
> 
>  
> 
> We are being successful with finding people (not all but enough to have 
> dialogue)
> 
>  
> 
> Anyone wishing to join the Social Facebook page do not hesitate
> 
>  
> 
> Marty I will email you privately – perhaps the attachment and list would be 
> easier to send to me
> 
>  
> 
> 18’s
> 
>  
> 
> Yes I use now
> 
>  
> 
> Love to all
> 
>  
> 
> Thank you for your support with connecting and reconnecting to others
> 
>  
> 
> Sue Hurt
> 
> #1197
> 
>   
> 
>  
> 
>  
> 
> -- 
> -- 
> [CMLHope]
> A support group of http://cmlhope.com
> -
>  
> You received this message because you are subscribed to the Google Groups 
> "CMLHope" group.
> To post to this group, send email to CMLHope@googlegroups.com
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> cmlhope-unsubscr...@googlegroups.com
> For more options, visit this group at http://groups.google.com/group/CMLHope
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>  
> You received this message because you are subscribed to the Google Groups 
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Re: [CMLHope] To Susan Zimmerman

[ICANDOALLTTC via CMLHope]

Hi and yes I use bag balm.  My son bought it at a farm store.
I had rashes, boils, and you name it while on Gleevec.
It works really well.
My doctor gave me some hydrocortizone cream.
Try anything you can and see what works for you.
Mile soda water solution is good also.
Blessings
Jeanie<3
 
 
In a message dated 3/31/2016 1:19:35 P.M. Eastern Daylight Time,  
wa2...@gmail.com writes:

 
Hi Kate,


I am sad that you have to be here, but at the same time I am also  glad 
that your here. Sad you have CML but glad because you will be able to  learn 
many things from everyone of us that are here. 


Do you know or possibly know of anyone that have used Bag Balm? Well you  
actually now know of someone that did.. Me.


If you have any rashes or worse on your body, as long as they are not in  
places that come in contact with your clothing because this is very greasy 
and  you don't want it on any of your clothing. 


When I had my bone marrow transplant 27 years ago I had to undergo total  
body radiation after my procedure was completed my body suffered from severe  
burns. My toes were black my ears, nose, fingers, head, hands and most  
other parts, even the bottoms of my feet, and that was the worst of it because  
I was living in a plastic 6 by 9 bubble in the hospital at the time and  
all of the radiation had to be finished at the time. 


They were not even allowed to enter this bubble because it would expose  me 
to any types of bacteria, or mold or any types of viruses, so I had to  
survive living in pain until I was finally able to get out of  there.


They tried many different things like Kerry oil or lotion but it only  
worked very little to heal all of the burns. A friend of mine told me to try  
Bag Balm so I tried it and it finally worked!


Bag Balm comes in small square green tins usually in either 1 ounce or 8  
ounce sizes. They are very inexpensive usually between $6 to $8. They will  
last over 27 years or more providing that you don't touch it with your 
fingers  but a Q-tip would be fine because you only need a very small amount.


I have had my 8 ounce tin for over 27 years now and still use it from  time 
to time and about one half is still left, so you may just wand the one  
ounce tin, but since the price between the 8 ounce and one ounce are only a  
couple of dollars then you make up your mind.


Remember it was and still is used for the otters of cows usually in the  
winter time when they are chapped.






http://www.amazon.com/s/?ie=UTF8=vermont+original+bag+balm=goog
hydr-20=aps=92441825437=1t2==s=80041
28417658345===b=c=pd_sl_6tq5alc55b_b_p10





On Tue, Mar 29, 2016 at 11:53 PM, Richard H <_rbhuffman1@gmail.com_ 
(mailto:rbhuffm...@gmail.com) > wrote:

I only know that some CMLers have a rash but not acne.   Most I have heard 
of treat with an anti-itch creme.  I am sure others  will be able to tell 
you more.  I haven't had one, just remember the  talk.

Welcome to the club that no one wants to be a member of.   I have been 
around for 14 years 

Richard H.

On Tuesday, March  29, 2016 at 1:42:02 PM UTC-5, candles wrote:  
 
Hi all,
I am real new to the CML world only 14 months out from diagnosis. I  have 
learned a lot from reading posts here. It's been helpful.  My dr  is a CML dr 
and I've had very good results medicine wise but he has no  answers for 
side effects Specially  bad acne break outs. All he  says it's because I'm 
on the young side to have developed CML.  I'm  almost 57. Been seeing a 
dermatologist but results have been minimal.  Anyone out there got any 
suggestions? I'm taking 200mg daily of gleevec.  Was on 400 of tasigna which 
was hell 
on earth. Anything would be  helpful.
18's
Kate

Sent from my iPhone

On Mar 28, 2016, at 9:51 PM, 'Susan Zimmerman' via CMLHope 
 wrote:




Marcie, 
So glad the gall bladder settled down. I give our  God ALL the credit for 
that! So sorry to hear about your husband's  issues as well. Is he doing ok 
now? Not sposed to take turns at the  hospital. How will you ever get in a 
vacation? Blessings at Passover  time. 
Love, 

Susan F. Zimmerman
"All who humble themselves before the  Lord shall be given every blessing, 
and shall have wonderful peace."  Ps.37:11


 

On Saturday,  March 26, 2016 'Marcie Goodman' via CMLHope 
  wrote:


 
Thanks, Susan. I missed an appointment for blood labs because my  husband 
was in the hospital and having complications from his medical  issues. No one 
to blame but myself. 


The pain on side has gone so at least for now I'm not going to  worry about 
it. I'll be following up this week with my doctor for more  labs and tests. 


So glad you are doing well. This is the season for miracles and I  wish you 
and Roy and the family a happy and very blessed  Easter. 


Marcie 

Sent from my iPhone


On Mar 24, 2016, at 5:25 PM, 'Susan Zimmerman' via CMLHope  
 wrote:




So 

Re: [CMLHope] Zavie Zero Club Numbers - MARTY

[ICANDOALLTTC via CMLHope]

Hi I did receive the picture and list.
You have to go down to the very end to see the picture.
Thanks Marty.
 
 
In a message dated 4/1/2016 7:42:50 A.M. Eastern Daylight Time,  
hol...@iinet.net.au writes:

 
Zavie Zero Club Numbers 
Hi Marty  
Wow !! 
Thank you for the list  - will prove helpful – What a  wonderful gift  
List did not go to # 826  
Only to # 403 
No – I did not receive an attachment of Zavie in the  Magazine 
Would be delighted to receive so I can post to others on  the new site 
We are being successful with finding people (not all but  enough to have 
dialogue)  
Anyone wishing to join the Social Facebook page do not  hesitate 
Marty I will email you privately – perhaps the attachment  and list would 
be easier to send to me  
18’s  
Yes I use now 
Love to all  
Thank you for your support with connecting and reconnecting  to others 
Sue Hurt 
#1197 

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Re: [CMLHope] ZAVIE ZERO CLUB NUMBER

[ICANDOALLTTC via CMLHope]

Thanks Emile, I didn't get remission until I was put on Sprycel in  2009.
I believe I was in the 900 # list.
Thanks for giving us the list.
Blessings
Jeanie<3
 
 
In a message dated 4/1/2016 9:17:30 A.M. Eastern Daylight Time,  
wa2...@gmail.com writes:

 
Hi Emile,


I have been getting some posts from this site asking to be able to put  
themselves on the list. I couldn't sleep so I was up from 3 am until now  
trying to peace everything together. I know for a fact that Bobby Doyle is 840  
but it wasn't posted. Then there is Jeannie  and they just posted this  
morning so their posts should appear right this morning. I would kindly  ask 
you 
to update their name/s into the list it could start the ball  rolling. 


However if anyone doesn't remember their number then it would probably  
make things very difficult but maybe if someone out there does have  the rest 
of the of list then "Bingo" were in business!


There is another site that I usually post on and I already have posted  the 
list on there but for now lets try getting everything on here.


I am really tired now so I need some restful sleep about now.


Thank you everyone.


18's,


Marty


On Thu, Mar 31, 2016 at 4:29 PM, Emile Fichault 
<_EmileFichault@hotmail.com_ (mailto:emileficha...@hotmail.com) > wrote:


 
Zavie did send me long time ago a list of the zero club . At this time ,  
the last one was around no 800 ( like I said , long time ago ) . 

So I hope this information will help you . 
Emile , Repentigny , Canada . 
no 528 of the VIP list of our friend Zavie .


 

  
De : _cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com)  
<_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > de la part de 
Marty  
Gartenberg <_wa2yyx@gmail.com_ (mailto:wa2...@gmail.com) >
Envoyé : 31 mars 2016  16:21
À : _cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) 
Objet : Re: [CMLHope]  ZAVIE ZERO CLUB NUMBER - INVITATION  


 
 
 
I believe that Ida had it but when she died I guess that it went with  her. 
Maybe some one that I don't know of may still have it, try asking  around.


18's


Marty


On Thu, Mar 31, 2016 at 3:40 PM, 'Icandoallttc' via  CMLHope 
<_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > wrote:


Hi all,
I got my number many years ago but can't remember it. Did he have a  list 
and does anyone have access to it?
Thanks

My Motto: Faith and Pills❤️  
With Jeanie 18,s Chi  
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center


 
 

On Mar 31, 2016, at 12:14 PM, Myvety2k via CMLHope 
<_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > wrote:




Marty,  I forgot to add that many people would  ask me what the number 48 
on the side of the hat stood for, then I would  tell them the story about 
Zavie, etc.
 
greenie
 
 
In a message dated 3/31/2016 12:12:27 P.M. Eastern Daylight Time,  
_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com)  writes:

Hi Marty, I do remember the good old day's and  Zavie's club which I am 
#48.  Well, anyway I had some hats made  up, I was stationed at the "Glenview 
Navy Air Station" for 6 Years  from 1956 to 1962, and on the side of each hat 
I had the number 48  embroidery on the side of all the hats. I still where 
them every  day.
 
Greenie,
South Fort Myers, FL.
 
 
In a message dated 3/31/2016 11:27:36 A.M. Eastern Daylight Time,  
_wa2yyx@gmail.com_ (mailto:wa2...@gmail.com)  writes:

 
Hi Sue,


I don't like to get involved with any social media because,  first I just 
don't  have the time and I am to busy as well as  for some personal reasons.


If it helps, many years I actually personally knew Zavie and  his wife Ida, 
and since my bone marrow transplant came way before  became Zavie became 
because of how active I was even able to  help him. I remember when he first 
met Dr. Drunker and started on a  drug at the time that was called STI-571 
which then became  Gleevec. And this became something what was able to save so 
many  lives of the people with CML, and still does, more and more drugs  
(TKI) started to spring up, and this is why I always keep saying  that there 
WILL be a cure soon.


Probably most of the newcomers to CML, as we referred to it as  "the club 
that no one wants to be in" probably never even heard  about Zavie or even 
have never seen him. So without further a-due  let me present you with a 
picture of him an the cover of a magazine  that I have kept for a very long 
time. 


I am also number 1 in Zavie's zero club, and Zavie and Ida  personally 
presented it to me when they were down in Florida. The  last thing I would like 
to say about Zavie is that he was a real  Mensch, meaning a real good man.


Also please let me know if you were able to receive this along  with the 
picture I have enclosed in the

Re: [CMLHope] ZAVIE ZERO CLUB NUMBER - INVITATION

['Icandoallttc' via CMLHope]

Hi all,
I got my number many years ago but can't remember it. Did he have a list and 
does anyone have access to it?
Thanks

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Mar 31, 2016, at 12:14 PM, Myvety2k via CMLHope  
> wrote:
> 
> Marty,  I forgot to add that many people would ask me what the number 48 on 
> the side of the hat stood for, then I would tell them the  story about Zavie, 
> etc.
>  
> greenie
>  
> In a message dated 3/31/2016 12:12:27 P.M. Eastern Daylight Time, 
> cmlhope@googlegroups.com writes:
> Hi Marty, I do remember the good old day's and Zavie's club which I am #48.  
> Well, anyway I had some hats made up, I was stationed at the "Glenview Navy 
> Air Station" for 6 Years from 1956 to 1962, and on the side of each hat I had 
> the number 48 embroidery on the side of all the hats. I still where them 
> every day.
>  
> Greenie,
> South Fort Myers, FL.
>  
> In a message dated 3/31/2016 11:27:36 A.M. Eastern Daylight Time, 
> wa2...@gmail.com writes:
> Hi Sue,
> 
> I don't like to get involved with any social media because, first I just 
> don't  have the time and I am to busy as well as for some personal reasons.
> 
> If it helps, many years I actually personally knew Zavie and his wife Ida, 
> and since my bone marrow transplant came way before became Zavie became 
> because of how active I was even able to help him. I remember when he first 
> met Dr. Drunker and started on a drug at the time that was called STI-571 
> which then became Gleevec. And this became something what was able to save so 
> many lives of the people with CML, and still does, more and more drugs (TKI) 
> started to spring up, and this is why I always keep saying that there WILL be 
> a cure soon.
> 
> Probably most of the newcomers to CML, as we referred to it as "the club that 
> no one wants to be in" probably never even heard about Zavie or even have 
> never seen him. So without further a-due let me present you  with a 
> picture of him an the cover of a magazine that I have kept for a very long 
> time.
> 
> I am also number 1 in Zavie's zero club, and Zavie and Ida personally 
> presented it to me when they were down in Florida. The last thing I would 
> like to say about Zavie is that he was a real Mensch, meaning a real good man.
> 
> Also please let me know if you were able to receive this along with the 
> picture I have enclosed in the attachment.
> 
> 18's
> 
> Marty 
> 
>> On Thu, Mar 31, 2016 at 10:00 AM, Sue  wrote:
>> Hi Everyone
>> 
>>  
>> 
>> Are you on face book – If so we have a new face book page seeking to 
>> reconnect with those who received a ZAVIE ZERO CLUB NUMBER
>> 
>>  
>> 
>> Facebook Page for those who were diagnosed prior to 2010
>> 
>>  
>> 
>> Searching for those who were on the Yahoo Site prior to June 2010
>> 
>> ...
>> 
>> and presented with a Zero Club Number when they got to CCR
>> 
>>  
>> 
>> Do you have a Zavie Miller ZERO CLUB Number ?
>> 
>> 
>> If so please join this group - add Name, Number, where located, how long you 
>> have been diagnosed with CML, medication and dose and how you are currently.
>> 
>> Zavie always left a sign off with a Yippee !! Yahoo !!
>> 
>>  
>> 
>>  
>> 
>> https://www.facebook.com/groups/1673390782910601/
>> 
>> ZAVIE - CML ZERO CLUB MEMBERS - WHERE ARE YOU ?
>> 
>> Reunite with friends from the start of your diagnosis of CML (Yahoo) Group
>> 
>> The Zavie Zero Club Number only went up to 1340 as this was the last number 
>> presented
>> 
>>  
>> 
>>  
>> 
>> Thank you in advance
>> 
>> Sue Hurt
>> 
>> (Australia #1197)
>> 
>>  
>> 
>> -- 
>> -- 
>> [CMLHope]
>> A support group of http://cmlhope.com
>> -
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>> You received this message because you are subscribed to the Google Groups 
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Re: [CMLHope] My March UPdate

['Icandoallttc' via CMLHope]

Yes and yahoo!!!'blessings

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Mar 27, 2016, at 1:30 AM, Richard H  wrote:
> 
> I received my BCR-ABL report today with good news.  My count was down to 
> .001%.  I am still taking a CBC weekly and take Procrit most of the time to 
> build back my hemoglobin.
> 
> In my CML world of 14 years, remaining at a low consistent count is a 
> Hallelujah or YIPPIEE!!!  
> 
> 
> 
> In this religious season of the year, I wish blessings to each one of my CML 
> friends.
> 
> 
> 
> 18's
> 
> 
> 
> Richard H.
> 
> -- 
> -- 
> [CMLHope]
> A support group of http://cmlhope.com
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Re: [CMLHope] To Susan Zimmerman

['Icandoallttc' via CMLHope]

Hi Marcie
I loved the wig idea.  My hair was coming out in clumps on Gleevec but for some 
reason it grew back in. 
On Ponatinib my hair is coming out again. So thin and my skin feels like 
leather.  It feels so strange to look at your brush and see all that hair in 
it. 
Wigs for me too if it doesn't stop. 
Thanks for the update. 

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Mar 26, 2016, at 1:26 PM, 'Marcie Goodman' via CMLHope 
>  wrote:
> 
> Angie, what a time you have had!  It must be a pleasure to be off the 
> Gleevec. My platelets and counts were good. The red cells and everything 
> related to them were off. Looks like I have perhaps developed severe iron 
> deficient anemia. I'll be having more labs and tests to try and figure it 
> out. I'm thrilled to be home and I'm from much better. 
> 
> Seven years of Gleevec destroyed my hair. So wigs for me and I love it. Never 
> have a bad hair day and never have to spend a second on it!
> 
> Stay well. So good to hear from you. 
> 
> Marcie 
> 
> Sent from my iPhone
> 
>> On Mar 24, 2016, at 8:37 PM, ANGELYN ESDERS  wrote:
>> 
>> Hi. Marcie.
>> Did your platelets also bottom out with your red cells?
>> A year ago April I lost almost every single platelet, and also needed 6 
>> blood transfusions in a week. The specialists had blamed it on my lupus.
>> I recovered and strangely lost a LOT of hairbut I have been very well 
>> since then. My hair is growing back.
>> Have been in remission from CML since July 2001. I have been off Gleevec for 
>> 10 months now. So far so good.
>> With a tag-team like leukemia and lupus, one never knows what to expect next.
>> Anyway, Life is good. No complaints.
>> Angie in Canada
>> 
>> 
>> From: 'Marcie Goodman' via CMLHope 
>> To: cmlhope@googlegroups.com 
>> Sent: Thursday, March 24, 2016 5:07 PM
>> Subject: Re: [CMLHope] To Susan Zimmerman
>> 
>> Susan, as always, I have you and Roy in my prayers. Please let us know how 
>> your test turns out. 
>> 
>> I just got out of hospital because my red cells bottomed out and I became 
>> very sick. So some transfusions and several days later, just came home. I 
>> will be undergoing more tests, might have gallbladder problem which arose 
>> after I was discharged, naturally!  Ultrasound tomorrow. Never dull but 
>> always interesting!
>> 
>> Marcie
>> 
>> 
>> 
>> Sent from my iPhone
>> 
>>> On Mar 24, 2016, at 5:01 PM, 'Susan Zimmerman' via CMLHope 
>>>  wrote:
>>> 
>>> Thanks for the encouragement. I may write him but not confident he would 
>>> have any different answers. Dr. Jessica Altman is completely on top of 
>>> things for me. I"ve been to two other specialists at Nwestern to dig into 
>>> causesnothing unusual except cavernous malformations turns up. Have 
>>> checked everything at least three times over the yrs. So again off meds 
>>> hopefully for a long time unless #'s go high.
>>> Tomorrow getting tested again w bcr/abl. Best answers are through prayer!!!
>>> Hope all is well with you!
>>> Susan F. Zimmerman
>>> "All who humble themselves before the Lord shall be given every blessing, 
>>> and shall have wonderful peace." Ps.37:11
>>> 
>>> 
>>> On Thursday, March 17, 2016 'Susan Rosenthal' via CMLHope 
>>>  wrote:
>>> 
>>> Susan:
>>> 
>>> Are you able to have an appointment with Dr. Druker in Portland, Oregon?
>>> 
>>> At least email him
>>> 
>>> Hugs,
>>> Susan Rosenthal
>>> 
>>> Have a wonderful day
>>> 
>>> -- 
>>> -- 
>>> [CMLHope]
>>> A support group of http://cmlhope.com/
>>> -
>>> 
>>> You received this message because you are subscribed to the Google Groups 
>>> "CMLHope" group.
>>> To post to this group, send email to CMLHope@googlegroups.com
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>>> cmlhope-unsubscr...@googlegroups.com
>>> For more options, visit this group at http://groups.google.com/group/CMLHope
>>> --- 
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>>> email to cmlhope+unsubscr...@googlegroups.com.
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>>> -- 
>>> -- 
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>>> A support group of http://cmlhope.com/
>>> -
>>>  
>>> You received this message because you are subscribed to the Google Groups 
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>>> You received this 

Re: [CMLHope] To Susan Zimmerman

['Icandoallttc' via CMLHope]

Hi Marcie and happy Easter to you too. 
Glad your pain has stopped. Mine used to stop too but now is constant.  
Have you had your gallbladder out?  I had mine out years ago. 
Yes get an MRI or ultrasound as soon as you can.  I just had a chest X-ray and 
showed my lungs were good and nothing changed since I had my last one. 
Hang in there warrior. 

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Mar 26, 2016, at 1:15 PM, 'Marcie Goodman' via CMLHope 
> <cmlhope@googlegroups.com> wrote:
> 
> Thanks so very much, Jeanie. The pain on right side has stopped but I wish 
> get an ultrasound as soon as I feel stronger. You are correct - faith and 
> pills!
> 
> Best wishes for a blessed and Happy Easter. 
> 
> Marcie 
> 
> Sent from my iPhone
> 
>> On Mar 24, 2016, at 5:19 PM, 'Icandoallttc' via CMLHope 
>> <cmlhope@googlegroups.com> wrote:
>> 
>> Hi Susan and Marcie
>> Prayers for both of you.  Sorry for your hospital stay but we need them when 
>> we get sick.  I hope you find the root of your problems.  
>> I had my gallbladder out many years ago.   That's some bad pain.  Good luck. 
>> Susan good luck off meds.  Hang in there and fight. Blessings 
>> 
>> My Motto: Faith and Pills❤️
>> With Jeanie 18,s Chi
>> Dx 1/2004. CML Leukemia
>> Started Gleevec 2/2004
>> Started Tasigna  9/2009
>> Started Sprycel 11/2009
>> Started Ponatinib January 2015
>> Dr Balducci Moffitt Cancer Center
>> 
>>> On Mar 24, 2016, at 5:07 PM, 'Marcie Goodman' via CMLHope 
>>> <cmlhope@googlegroups.com> wrote:
>>> 
>>> Susan, as always, I have you and Roy in my prayers. Please let us know how 
>>> your test turns out. 
>>> 
>>> I just got out of hospital because my red cells bottomed out and I became 
>>> very sick. So some transfusions and several days later, just came home. I 
>>> will be undergoing more tests, might have gallbladder problem which arose 
>>> after I was discharged, naturally!  Ultrasound tomorrow. Never dull but 
>>> always interesting!
>>> 
>>> Marcie
>>> 
>>> 
>>> 
>>> Sent from my iPhone
>>> 
>>>> On Mar 24, 2016, at 5:01 PM, 'Susan Zimmerman' via CMLHope 
>>>> <cmlhope@googlegroups.com> wrote:
>>>> 
>>>> Thanks for the encouragement. I may write him but not confident he would 
>>>> have any different answers. Dr. Jessica Altman is completely on top of 
>>>> things for me. I"ve been to two other specialists at Nwestern to dig into 
>>>> causesnothing unusual except cavernous malformations turns up. Have 
>>>> checked everything at least three times over the yrs. So again off meds 
>>>> hopefully for a long time unless #'s go high.
>>>> 
>>>> Tomorrow getting tested again w bcr/abl. Best answers are through prayer!!!
>>>> 
>>>> Hope all is well with you!
>>>> 
>>>> Susan F. Zimmerman
>>>> "All who humble themselves before the Lord shall be given every blessing, 
>>>> and shall have wonderful peace." Ps.37:11
>>>> 
>>>> 
>>>> 
>>>> On Thursday, March 17, 2016 'Susan Rosenthal' via CMLHope 
>>>> <cmlhope@googlegroups.com> wrote:
>>>> 
>>>> Susan:
>>>> 
>>>> Are you able to have an appointment with Dr. Druker in Portland, Oregon?
>>>> 
>>>> At least email him
>>>> 
>>>> Hugs,
>>>> Susan Rosenthal
>>>> 
>>>> Have a wonderful day
>>>> 
>>>> -- 
>>>> -- 
>>>> [CMLHope]
>>>> A support group of http://cmlhope.com
>>>> -
>>>> 
>>>> You received this message because you are subscribed to the Google Groups 
>>>> "CMLHope" group.
>>>> To post to this group, send email to CMLHope@googlegroups.com
>>>> To unsubscribe from this group, send email to 
>>>> cmlhope-unsubscr...@googlegroups.com
>>>> For more options, visit this group at 
>>>> http://groups.google.com/group/CMLHope
>>>> --- 
>>>> You received this message because you are subscribed to the Google Groups 
>>>> "CMLHope" group.
>>>> To unsubscribe from this group and stop receivi

Re: [CMLHope] To Susan Zimmerman

['Icandoallttc' via CMLHope]

Wow Angie! My platelets go high not low.  So sorry to hear that. I did have 
transfusions on Tasigna as my platelets went under 8. I think he could have 
taken me off meds and they would have gone up. 
Every thing is good now.  


My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Mar 24, 2016, at 8:37 PM, ANGELYN ESDERS  wrote:
> 
> Hi. Marcie.
> Did your platelets also bottom out with your red cells?
> A year ago April I lost almost every single platelet, and also needed 6 blood 
> transfusions in a week. The specialists had blamed it on my lupus.
> I recovered and strangely lost a LOT of hairbut I have been very well 
> since then. My hair is growing back.
> Have been in remission from CML since July 2001. I have been off Gleevec for 
> 10 months now. So far so good.
> With a tag-team like leukemia and lupus, one never knows what to expect next.
> Anyway, Life is good. No complaints.
> Angie in Canada
> 
> 
> From: 'Marcie Goodman' via CMLHope 
> To: cmlhope@googlegroups.com 
> Sent: Thursday, March 24, 2016 5:07 PM
> Subject: Re: [CMLHope] To Susan Zimmerman
> 
> Susan, as always, I have you and Roy in my prayers. Please let us know how 
> your test turns out. 
> 
> I just got out of hospital because my red cells bottomed out and I became 
> very sick. So some transfusions and several days later, just came home. I 
> will be undergoing more tests, might have gallbladder problem which arose 
> after I was discharged, naturally!  Ultrasound tomorrow. Never dull but 
> always interesting!
> 
> Marcie
> 
> 
> 
> Sent from my iPhone
> 
>> On Mar 24, 2016, at 5:01 PM, 'Susan Zimmerman' via CMLHope 
>>  wrote:
>> 
>> Thanks for the encouragement. I may write him but not confident he would 
>> have any different answers. Dr. Jessica Altman is completely on top of 
>> things for me. I"ve been to two other specialists at Nwestern to dig into 
>> causesnothing unusual except cavernous malformations turns up. Have 
>> checked everything at least three times over the yrs. So again off meds 
>> hopefully for a long time unless #'s go high.
>> Tomorrow getting tested again w bcr/abl. Best answers are through prayer!!!
>> Hope all is well with you!
>> Susan F. Zimmerman
>> "All who humble themselves before the Lord shall be given every blessing, 
>> and shall have wonderful peace." Ps.37:11
>> 
>> 
>> On Thursday, March 17, 2016 'Susan Rosenthal' via CMLHope 
>>  wrote:
>> 
>> Susan:
>> 
>> Are you able to have an appointment with Dr. Druker in Portland, Oregon?
>> 
>> At least email him
>> 
>> Hugs,
>> Susan Rosenthal
>> 
>> Have a wonderful day
>> 
>> -- 
>> -- 
>> [CMLHope]
>> A support group of http://cmlhope.com/
>> -
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Re: [CMLHope] To Susan Zimmerman

['Icandoallttc' via CMLHope]

Hi Anthony and good to hear from you.  My right side pain was with me for a 
while but got worse when put in Tasigna.  
It now goes up to a 10 and have to take pain meds for it. No cure just 
management.  Probably a lot like Lupus. 
What tki do you take?

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Mar 25, 2016, at 10:52 AM, Anthony Lanoue <tonylan...@hotmail.com> wrote:
> 
> 
> I also get mild right side pain
> 
> Anthony Lanoue
> Sent with MailBuzzr
> On Mar 24, 2016, 5:44 PM, Icandoallttc' via CMLHope wrote:
> Hi Susan and thanks so much. 
> My side pain is still bad but tests show nothing. Just treating the pain.  I 
> read something about an MS hug.  My side pain has a lot of similarities to 
> that.  
> I think the tkis caused this as it got worse when I had to go on Tasigna.  
> My Creatine was up but it seems to go up and down along with potassium.  
> I've been on Ponatinib for 12 months now. 
> No test planned thank Heavens. Have to go back in 3 months.  They take PCR 
> every 3 months. I forgot to get my last results. Thanks again.  
> 
> My Motto: Faith and Pills❤️
> With Jeanie 18,s Chi
> Dx 1/2004. CML Leukemia
> Started Gleevec 2/2004
> Started Tasigna  9/2009
> Started Sprycel 11/2009
> Started Ponatinib January 2015
> Dr Balducci Moffitt Cancer Center
> 
>> On Mar 24, 2016, at 5:30 PM, 'Susan Zimmerman' via CMLHope 
>> <cmlhope@googlegroups.com> wrote:
>> 
>> Thank you so much, Jeanie!!! You are special to us all. How's the sideache 
>> and any more tests about it specifically?
>> 18"s,
>> 
>> 
>> Susan F. Zimmerman
>> "All who humble themselves before the Lord shall be given every blessing, 
>> and shall have wonderful peace." Ps.37:11
>> 
>> 
>> 
>> On Thursday, March 24, 2016 'Icandoallttc' via CMLHope 
>> <cmlhope@googlegroups.com> wrote:
>> 
>> Hi Susan and Marcie
>> Prayers for both of you.  Sorry for your hospital stay but we need them when 
>> we get sick.  I hope you find the root of your problems.  
>> I had my gallbladder out many years ago.   That's some bad pain.  Good luck. 
>> Susan good luck off meds.  Hang in there and fight. Blessings 
>> 
>> My Motto: Faith and Pills❤️
>> With Jeanie 18,s Chi
>> Dx 1/2004. CML Leukemia
>> Started Gleevec 2/2004
>> Started Tasigna  9/2009
>> Started Sprycel 11/2009
>> Started Ponatinib January 2015
>> Dr Balducci Moffitt Cancer Center
>> 
>> On Mar 24, 2016, at 5:07 PM, 'Marcie Goodman' via CMLHope 
>> <cmlhope@googlegroups.com> wrote:
>> 
>> Susan, as always, I have you and Roy in my prayers. Please let us know how 
>> your test turns out. 
>> 
>> I just got out of hospital because my red cells bottomed out and I became 
>> very sick. So some transfusions and several days later, just came home. I 
>> will be undergoing more tests, might have gallbladder problem which arose 
>> after I was discharged, naturally!  Ultrasound tomorrow. Never dull but 
>> always interesting!
>> 
>> Marcie
>> 
>> 
>> 
>> Sent from my iPhone
>> 
>> On Mar 24, 2016, at 5:01 PM, 'Susan Zimmerman' via CMLHope 
>> <cmlhope@googlegroups.com> wrote:
>> 
>> Thanks for the encouragement. I may write him but not confident he would 
>> have any different answers. Dr. Jessica Altman is completely on top of 
>> things for me. I"ve been to two other specialists at Nwestern to dig into 
>> causesnothing unusual except cavernous malformations turns up. Have 
>> checked everything at least three times over the yrs. So again off meds 
>> hopefully for a long time unless #'s go high.
>> 
>> Tomorrow getting tested again w bcr/abl. Best answers are through prayer!!!
>> 
>> Hope all is well with you!
>> 
>> Susan F. Zimmerman
>> "All who humble themselves before the Lord shall be given every blessing, 
>> and shall have wonderful peace." Ps.37:11
>> 
>> 
>> 
>> On Thursday, March 17, 2016 'Susan Rosenthal' via CMLHope 
>> <cmlhope@googlegroups.com> wrote:
>> 
>> Susan:
>> 
>> Are you able to have an appointment with Dr. Druker in Portland, Oregon?
>> 
>> At least email him
>> 
>> Hugs,
>> Susan Rosenthal
>> 
>> Have a wonderful day
>> 
>> -- 
>> -- 
>> [CMLHope]
>> A support group of http://cmlhope.com
>> -

Re: [CMLHope] To Susan Zimmerman

['Icandoallttc' via CMLHope]

Hi Susan and thanks so much. 
My side pain is still bad but tests show nothing. Just treating the pain.  I 
read something about an MS hug.  My side pain has a lot of similarities to 
that.  
I think the tkis caused this as it got worse when I had to go on Tasigna.  
My Creatine was up but it seems to go up and down along with potassium.  
I've been on Ponatinib for 12 months now. 
No test planned thank Heavens. Have to go back in 3 months.  They take PCR 
every 3 months. I forgot to get my last results. Thanks again.  

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Mar 24, 2016, at 5:30 PM, 'Susan Zimmerman' via CMLHope 
> <cmlhope@googlegroups.com> wrote:
> 
> Thank you so much, Jeanie!!! You are special to us all. How's the sideache 
> and any more tests about it specifically?
> 18"s,
> 
> 
> Susan F. Zimmerman
> "All who humble themselves before the Lord shall be given every blessing, and 
> shall have wonderful peace." Ps.37:11
> 
> 
> 
> On Thursday, March 24, 2016 'Icandoallttc' via CMLHope 
> <cmlhope@googlegroups.com> wrote:
> 
> Hi Susan and Marcie
> Prayers for both of you.  Sorry for your hospital stay but we need them when 
> we get sick.  I hope you find the root of your problems.  
> I had my gallbladder out many years ago.   That's some bad pain.  Good luck. 
> Susan good luck off meds.  Hang in there and fight. Blessings 
> 
> My Motto: Faith and Pills❤️
> With Jeanie 18,s Chi
> Dx 1/2004. CML Leukemia
> Started Gleevec 2/2004
> Started Tasigna  9/2009
> Started Sprycel 11/2009
> Started Ponatinib January 2015
> Dr Balducci Moffitt Cancer Center
> 
> On Mar 24, 2016, at 5:07 PM, 'Marcie Goodman' via CMLHope 
> <cmlhope@googlegroups.com> wrote:
> 
> Susan, as always, I have you and Roy in my prayers. Please let us know how 
> your test turns out. 
> 
> I just got out of hospital because my red cells bottomed out and I became 
> very sick. So some transfusions and several days later, just came home. I 
> will be undergoing more tests, might have gallbladder problem which arose 
> after I was discharged, naturally!  Ultrasound tomorrow. Never dull but 
> always interesting!
> 
> Marcie
> 
> 
> 
> Sent from my iPhone
> 
> On Mar 24, 2016, at 5:01 PM, 'Susan Zimmerman' via CMLHope 
> <cmlhope@googlegroups.com> wrote:
> 
> Thanks for the encouragement. I may write him but not confident he would have 
> any different answers. Dr. Jessica Altman is completely on top of things for 
> me. I"ve been to two other specialists at Nwestern to dig into 
> causesnothing unusual except cavernous malformations turns up. Have 
> checked everything at least three times over the yrs. So again off meds 
> hopefully for a long time unless #'s go high. 
> 
> Tomorrow getting tested again w bcr/abl. Best answers are through prayer!!!
> 
> Hope all is well with you!
> 
> Susan F. Zimmerman
> "All who humble themselves before the Lord shall be given every blessing, and 
> shall have wonderful peace." Ps.37:11
> 
> 
> 
> On Thursday, March 17, 2016 'Susan Rosenthal' via CMLHope 
> <cmlhope@googlegroups.com> wrote:
> 
> Susan:
> 
> Are you able to have an appointment with Dr. Druker in Portland, Oregon?
> 
> At least email him
> 
> Hugs,
> Susan Rosenthal
> 
> Have a wonderful day
> 
> -- 
> -- 
> [CMLHope]
> A support group of http://cmlhope.com
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Re: [CMLHope] To Susan Zimmerman

['Icandoallttc' via CMLHope]

Hi Susan and Marcie
Prayers for both of you.  Sorry for your hospital stay but we need them when we 
get sick.  I hope you find the root of your problems.  
I had my gallbladder out many years ago.   That's some bad pain.  Good luck. 
Susan good luck off meds.  Hang in there and fight. Blessings 

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Mar 24, 2016, at 5:07 PM, 'Marcie Goodman' via CMLHope 
>  wrote:
> 
> Susan, as always, I have you and Roy in my prayers. Please let us know how 
> your test turns out. 
> 
> I just got out of hospital because my red cells bottomed out and I became 
> very sick. So some transfusions and several days later, just came home. I 
> will be undergoing more tests, might have gallbladder problem which arose 
> after I was discharged, naturally!  Ultrasound tomorrow. Never dull but 
> always interesting!
> 
> Marcie
> 
> 
> 
> Sent from my iPhone
> 
>> On Mar 24, 2016, at 5:01 PM, 'Susan Zimmerman' via CMLHope 
>>  wrote:
>> 
>> Thanks for the encouragement. I may write him but not confident he would 
>> have any different answers. Dr. Jessica Altman is completely on top of 
>> things for me. I"ve been to two other specialists at Nwestern to dig into 
>> causesnothing unusual except cavernous malformations turns up. Have 
>> checked everything at least three times over the yrs. So again off meds 
>> hopefully for a long time unless #'s go high.
>> 
>> Tomorrow getting tested again w bcr/abl. Best answers are through prayer!!!
>> 
>> Hope all is well with you!
>> 
>> Susan F. Zimmerman
>> "All who humble themselves before the Lord shall be given every blessing, 
>> and shall have wonderful peace." Ps.37:11
>> 
>> 
>> 
>> On Thursday, March 17, 2016 'Susan Rosenthal' via CMLHope 
>>  wrote:
>> 
>> Susan:
>> 
>> Are you able to have an appointment with Dr. Druker in Portland, Oregon?
>> 
>> At least email him
>> 
>> Hugs,
>> Susan Rosenthal
>> 
>> Have a wonderful day
>> 
>> -- 
>> -- 
>> [CMLHope]
>> A support group of http://cmlhope.com
>> -
>> 
>> You received this message because you are subscribed to the Google Groups 
>> "CMLHope" group.
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Re: [CMLHope] Hi Everyone its been awhile

['Icandoallttc' via CMLHope]

Hi Shannon and great to hear from you.   So happy Gleevec is working.   It quit 
working for me after 5 years as you probably remember.  
I am now on one of the new generation of drugs called Ponatinib. It is working 
for me for one year now. 
You are still a young chick. Keep fighting and taking pictures.  Your son 
sounds wonderful.  
Love and happy Easter to you!!!


My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Mar 24, 2016, at 6:41 AM, Shannon L  wrote:
> 
> I checked out a few posts good to see a few I remember. I hope everyone is 
> doing well.
> I was dx 1998 sone was 15mths he is now 19 turning 20 at the end of the year 
> I have just past my 18yr of CML.
> Im since on Glivec 400mg and still in remission ( with a few problems as to 
> be expected.
> 
> I will have some major financial decisions to make soon but I have seen my 
> son complete high school and he is now studying for a yr at TAFE and working 
> part time now if he would only get his car licence but I will probably worry 
> more when he gets it. 
> 
> I have my own photography business which I work around my health as much as I 
> can I find as I get older now 56 I do find it harder I recently had the worst 
> chest infection that I can remember.
> 
> I am still dreaming of doing some travelling OS and around Australia so I 
> hope I can make this happen 
> 
> I wish everyone a safe easter 
> love to all Shannon xo
> 
> -- 
> -- 
> [CMLHope]
> A support group of http://cmlhope.com
> -
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Re: [CMLHope] Re: CMLHope] Re: Dizzy all day

['Icandoallttc' via CMLHope]

Hi Richard and thanks for the update. I didn't know they still did call ins. 
I feel my mom wouldn't be here if she hadn't had her pacemaker. 
She never had to have the battery replaced.  
She was overweight when she had it put in and the doctor told her to lose 
weight.  He said it was like putting a volts wagon battery in a Cadillac.  She 
did lose weight after being overweight all her life.  Just changed her way of 
eating. 
Good luck all. 

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Mar 22, 2016, at 11:50 PM, Richard H <rbhuffm...@gmail.com> wrote:
> 
> Welcome to the pacemaker club.  I have had one for about 8 years.  Scar 
> tissue built up in my heart from 5 by-passes in1991.  I see my heart Dr. 
> Thursday and I will hear about the battery life left.  I think it is about 2 
> years left and I have to report in by phone 3 times and 1 visit a year..  
> Wonderful piece of engineering.
> 
> I found an increase in energy by the I got home (overnight stay)).  
> 
> We'll just keep on keeping on.
> 
> 18's
> 
> Richard H.
> 
>> On Monday, March 21, 2016 at 11:48:00 PM UTC-5, wa2yyx wrote:
>> Hi Susan,
>> 
>> Yes I am finally home. Left the hospital at 3:00 PM and it took my wife 
>> about one hour to drive back home. The pacemaker is in and adjusted and fine 
>> tuned. Amazing how these work. No more fainting spells which only would last 
>> for only 2 seconds so I haven't actually fainted. I was always been able to 
>> keep my eyes open and hear as well as even hearing and talking   Have some 
>> pain where they made the incision but some Tylenol PM should help me sleep, 
>> nothing I can't handle.
>> 
>> Thank you for asking about me.   
>> 
>> 18's,
>> 
>> Marty
>> 
>>> On Mon, Mar 21, 2016 at 7:25 PM, 'Susan Zimmerman' via CMLHope 
>>> <cml...@googlegroups.com> wrote:
>>> Love you to pieces, Marty! Hope you comfortably home by now. An update for 
>>> me, please!
>>> 
>>> 18's,
>>> 
>>> Susan F. Zimmerman
>>> "All who humble themselves before the Lord shall be given every blessing, 
>>> and shall have wonderful peace." Ps.37:11
>>> 
>>> On Monday, March 21, 2016 Myvety2k via CMLHope <cml...@googlegroups.com> 
>>> wrote:
>>> Marty, got my fingers crossed.
>>>  
>>> greenie
>>>  
>>> In a message dated 3/21/2016 8:41:14 A.M. Eastern Daylight Time, 
>>> wa2...@gmail.com writes:
>>> Hi Beth, 
>>> 
>>> I am actually still in the hospital but maybe today I will be getting out 
>>> just have to wait for the doctors when they make their rounds. I will keep 
>>> everyone updated.
>>> 
>>> 18's,
>>> 
>>> Marty
>>> 
>>> bkbarney via CMLHope <cml...@googlegroups.com> wrote:
>>> Dear Marty,
>>> So glad you are out of the hospital! And Peg, you are so right about what 
>>> you said to Jeanie...Hope everyone is doing as well as possible. Thinking 
>>> of all of you...love, and 18's Beth
>>> 
>>> -Original Message-
>>> From: 'Icandoallttc' via CMLHope <cml...@googlegroups.com>
>>> To: peg <peg...@live.com>
>>> Cc: CMLHope <cml...@googlegroups.com>
>>> Sent: Fri, Mar 18, 2016 11:19 am
>>> Subject: [CMLHope] Re: Dizzy all day
>>> 
>>> Thanks Peg,
>>> You are so right.  I was reading the side effects of ponatinib and i was 
>>> thinking I have to take this??!
>>> Well yes I do and blood clots and heart problems are right up there high on 
>>> the list. 
>>> My potassium tends to be high also and you can get heart problems from 
>>> that. 
>>> Just have to fight on and thanks again. 
>>> 
>>> 
>>> 
>>> My Motto: Faith and Pills❤️
>>> With Jeanie 18,s Chi
>>> Dx 1/2004. CML Leukemia
>>> Started Gleevec 2/2004
>>> Started Tasigna  9/2009
>>> Started Sprycel 11/2009
>>> Started Ponatinib January 2015
>>> Dr Balducci Moffitt Cancer Center
>>> 
>>> On Mar 18, 2016, at 12:00 PM, peg <peg...@live.com> wrote:
>>> 
>>> 
>>> Hi Jeanie, 
>>> 
>>> I was traveling on business this week and just checked in and am wondering 
>>> if you are feeling better?  
>>> 
>>> I had to caution another cancer patient recently not t

Re: [CMLHope] Re: CMLHope] Re: Dizzy all day

['Icandoallttc' via CMLHope]

Hi Marty and so happy to hear you are home.  I was wondering why they didn't 
put in a pacemaker. My mom had to have one in her 70s and her heart ran smooth 
until she passed away at 87. I remember she had a phone that she could test it 
every week.  It beat at a steady 70 beats per minute. 
My sister 84 recently had to have one and my brother had one put in in his 70s. 
So keep ticking and praying for all of us. 
❤️❤️❤️
My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Mar 22, 2016, at 12:47 AM, Marty Gartenberg <wa2...@gmail.com> wrote:
> 
> Hi Susan,
> 
> Yes I am finally home. Left the hospital at 3:00 PM and it took my wife about 
> one hour to drive back home. The pacemaker is in and adjusted and fine tuned. 
> Amazing how these work. No more fainting spells which only would last for 
> only 2 seconds so I haven't actually fainted. I was always been able to keep 
> my eyes open and hear as well as even hearing and talking   Have some pain 
> where they made the incision but some Tylenol PM should help me sleep, 
> nothing I can't handle.
> 
> Thank you for asking about me.   
> 
> 18's,
> 
> Marty
> 
>> On Mon, Mar 21, 2016 at 7:25 PM, 'Susan Zimmerman' via CMLHope 
>> <cmlhope@googlegroups.com> wrote:
>> Love you to pieces, Marty! Hope you comfortably home by now. An update for 
>> me, please!
>> 
>> 18's,
>> 
>> Susan F. Zimmerman
>> "All who humble themselves before the Lord shall be given every blessing, 
>> and shall have wonderful peace." Ps.37:11
>> 
>> On Monday, March 21, 2016 Myvety2k via CMLHope <cmlhope@googlegroups.com> 
>> wrote:
>> Marty, got my fingers crossed.
>>  
>> greenie
>>  
>> In a message dated 3/21/2016 8:41:14 A.M. Eastern Daylight Time, 
>> wa2...@gmail.com writes:
>> Hi Beth, 
>> 
>> I am actually still in the hospital but maybe today I will be getting out 
>> just have to wait for the doctors when they make their rounds. I will keep 
>> everyone updated.
>> 
>> 18's,
>> 
>> Marty
>> 
>> bkbarney via CMLHope <cmlhope@googlegroups.com> wrote:
>> Dear Marty,
>> So glad you are out of the hospital! And Peg, you are so right about what 
>> you said to Jeanie...Hope everyone is doing as well as possible. Thinking of 
>> all of you...love, and 18's Beth
>> 
>> -Original Message-
>> From: 'Icandoallttc' via CMLHope <cmlhope@googlegroups.com>
>> To: peg <peg@live.com>
>> Cc: CMLHope <cmlhope@googlegroups.com>
>> Sent: Fri, Mar 18, 2016 11:19 am
>> Subject: [CMLHope] Re: Dizzy all day
>> 
>> Thanks Peg,
>> You are so right.  I was reading the side effects of ponatinib and i was 
>> thinking I have to take this??!
>> Well yes I do and blood clots and heart problems are right up there high on 
>> the list. 
>> My potassium tends to be high also and you can get heart problems from that. 
>> Just have to fight on and thanks again. 
>> 
>> 
>> 
>> My Motto: Faith and Pills❤️
>> With Jeanie 18,s Chi
>> Dx 1/2004. CML Leukemia
>> Started Gleevec 2/2004
>> Started Tasigna  9/2009
>> Started Sprycel 11/2009
>> Started Ponatinib January 2015
>> Dr Balducci Moffitt Cancer Center
>> 
>> On Mar 18, 2016, at 12:00 PM, peg <peg@live.com> wrote:
>> 
>> 
>> Hi Jeanie, 
>> 
>> I was traveling on business this week and just checked in and am wondering 
>> if you are feeling better?  
>> 
>> I had to caution another cancer patient recently not to write off sudden 
>> changes as normal...caused by treatment, age, etc.  The new generation of 
>> meds to treat CML and other cancers can have side effects that can be deadly 
>> if not caught in time.  Sprycel was a really good example of this. Prior to 
>> the FDA warning that it can cause deadly pulmonary hypertension no one was 
>> paying attention to folks that were already on it.  When one of our CML 
>> warriors started feeling weak and dizzy, even her doctor dismissed it, for 
>> months, until she collapsed and woke up in the cardiac care unit.  She 
>> almost died, and had a long road to recovery. Her spreading the word saved 
>> other lives!   Everyone should know their meds, know what the symptoms are 
>> of the dangerous side effects and alert their doctor if those symptoms 
>> present. It doesn't hurt to tell the doctor you are concerned it is a side 
>> ef

Re: [CMLHope] Re: CMLHope] Re: Dizzy all day

['Icandoallttc' via CMLHope]

Prayers Marty!!' ❤️

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Mar 21, 2016, at 10:05 AM, Marty Gartenberg <wa2...@gmail.com> wrote:
> 
> Thanks
> 
> 18's
> 
> Marty
> 
>> On Monday, March 21, 2016, Myvety2k via CMLHope <cmlhope@googlegroups.com> 
>> wrote:
>> Marty, got my fingers crossed.
>>  
>> greenie
>>  
>> In a message dated 3/21/2016 8:41:14 A.M. Eastern Daylight Time, 
>> wa2...@gmail.com writes:
>> Hi Beth, 
>> 
>> I am actually still in the hospital but maybe today I will be getting out 
>> just have to wait for the doctors when they make their rounds. I will keep 
>> everyone updated.
>> 
>> 18's,
>> 
>> Marty
>> 
>> bkbarney via CMLHope <cmlhope@googlegroups.com> wrote:
>> Dear Marty,
>> So glad you are out of the hospital! And Peg, you are so right about what 
>> you said to Jeanie...Hope everyone is doing as well as possible. Thinking of 
>> all of you...love, and 18's Beth
>> 
>> -Original Message-
>> From: 'Icandoallttc' via CMLHope <cmlhope@googlegroups.com>
>> To: peg <peg@live.com>
>> Cc: CMLHope <cmlhope@googlegroups.com>
>> Sent: Fri, Mar 18, 2016 11:19 am
>> Subject: [CMLHope] Re: Dizzy all day
>> 
>> Thanks Peg,
>> You are so right.  I was reading the side effects of ponatinib and i was 
>> thinking I have to take this??!
>> Well yes I do and blood clots and heart problems are right up there high on 
>> the list. 
>> My potassium tends to be high also and you can get heart problems from that. 
>> Just have to fight on and thanks again. 
>> 
>> 
>> 
>> My Motto: Faith and Pills❤️
>> With Jeanie 18,s Chi
>> Dx 1/2004. CML Leukemia
>> Started Gleevec 2/2004
>> Started Tasigna  9/2009
>> Started Sprycel 11/2009
>> Started Ponatinib January 2015
>> Dr Balducci Moffitt Cancer Center
>> 
>> On Mar 18, 2016, at 12:00 PM, peg <peg@live.com> wrote:
>> 
>> 
>> Hi Jeanie, 
>> 
>> I was traveling on business this week and just checked in and am wondering 
>> if you are feeling better?  
>> 
>> I had to caution another cancer patient recently not to write off sudden 
>> changes as normal...caused by treatment, age, etc.  The new generation of 
>> meds to treat CML and other cancers can have side effects that can be deadly 
>> if not caught in time.  Sprycel was a really good example of this. Prior to 
>> the FDA warning that it can cause deadly pulmonary hypertension no one was 
>> paying attention to folks that were already on it.  When one of our CML 
>> warriors started feeling weak and dizzy, even her doctor dismissed it, for 
>> months, until she collapsed and woke up in the cardiac care unit.  She 
>> almost died, and had a long road to recovery. Her spreading the word saved 
>> other lives!   Everyone should know their meds, know what the symptoms are 
>> of the dangerous side effects and alert their doctor if those symptoms 
>> present. It doesn't hurt to tell the doctor you are concerned it is a side 
>> effect of your meds, you would be surprised how many doctors are not 
>> familiar with the side effects of the meds they are prescribing!  
>> 
>> I think those of us living with cancer or any other chronic disease are kind 
>> of stoic and don't whine a lot...but sometimes we should.
>> 
>> Note to Marty...since I am sure you are reading this...you are in my 
>> prayers!!
>> 
>> Fight on,
>> Peg
>> 
>> -- 
>> -- 
>> [CMLHope]
>> A support group of http://cmlhope.com
>> -
>>  
>> You received this message because you are subscribed to the Google Groups 
>> "CMLHope" group.
>> To post to this group, send email to CMLHope@googlegroups.com
>> To unsubscribe from this group, send email to 
>> cmlhope-unsubscr...@googlegroups.com
>> For more options, visit this group at http://groups.google.com/group/CMLHope
>> --- 
>> You received this message because you are subscribed to the Google Groups 
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>> -- 
>> -- 
>> [CMLHope]
>> A support grou

[CMLHope] Re: Dizzy all day

['Icandoallttc' via CMLHope]

Thanks Peg,
You are so right.  I was reading the side effects of ponatinib and i was 
thinking I have to take this??!
Well yes I do and blood clots and heart problems are right up there high on the 
list. 
My potassium tends to be high also and you can get heart problems from that. 
Just have to fight on and thanks again. 



My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Mar 18, 2016, at 12:00 PM, peg  wrote:
> 
> 
> Hi Jeanie, 
> 
> I was traveling on business this week and just checked in and am wondering if 
> you are feeling better?  
> 
> I had to caution another cancer patient recently not to write off sudden 
> changes as normal...caused by treatment, age, etc.  The new generation of 
> meds to treat CML and other cancers can have side effects that can be deadly 
> if not caught in time.  Sprycel was a really good example of this. Prior to 
> the FDA warning that it can cause deadly pulmonary hypertension no one was 
> paying attention to folks that were already on it.  When one of our CML 
> warriors started feeling weak and dizzy, even her doctor dismissed it, for 
> months, until she collapsed and woke up in the cardiac care unit.  She almost 
> died, and had a long road to recovery. Her spreading the word saved other 
> lives!   Everyone should know their meds, know what the symptoms are of the 
> dangerous side effects and alert their doctor if those symptoms present. It 
> doesn't hurt to tell the doctor you are concerned it is a side effect of your 
> meds, you would be surprised how many doctors are not familiar with the side 
> effects of the meds they are prescribing!  
> 
> I think those of us living with cancer or any other chronic disease are kind 
> of stoic and don't whine a lot...but sometimes we should.
> 
> Note to Marty...since I am sure you are reading this...you are in my prayers!!
> 
> Fight on,
> Peg
> 

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Re: [CMLHope] Dizzy all day

['Icandoallttc' via CMLHope]

Hi Susan and so glad to hear from you but sorry you are sick. Do you get the 
flu shot?
I get one yearly and dont seem to get the flu. 
Yes we worry if we take the meds and worry if we dont!!! 
Im much better so never figured out whats causing it.  Going to moffitt next 
week. Will post up date. They do pcr test every three months. 

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Mar 16, 2016, at 11:03 PM, 'Susan Zimmerman' via CMLHope 
> <cmlhope@googlegroups.com> wrote:
> 
> Dear Jeanie, 
> Sorry you're having troubles today. I havent been on for awhile cuz I've had 
> the wonderful flu...wheezing, coughing, exhausted. I'm getting over it 
> graduallytwo days ago I slept literally all day and night except for two 
> light meals.  Been on antibiotic for it.
> 
> Been tested again since going off bosulif cuz of the strokeint'l. Number 
> was .28quite a bit elevated from .019the test a month before.
> 
> I am not overly concerned at this point. Being
> 
> tested monthly locally and will go every 3 months to chicago. They are hoping 
> I will agree to go back on bosulif at 100 mg every other day to begin. I am 
> not ready at this point.
> Have seen two other specialists at Northwes%ern recommended by Dr. Altman. 
> Many tests showed nothing out of the ordinary!!! Rather frustrating but 
> enjoying no meds! Oh bp was up so back on bp meds again.
> 
> I havent deleted your posts but confess I havent read them yet either.
> 
> You all are in my prayers and I hope I'm in yours for my #"s to stay down.
> 
> Fightin on and 18's to all,
> Susan F. Zimmerman
> 
> 
> 
> On Wednesday, March 16, 2016 'Icandoallttc' via CMLHope 
> <cmlhope@googlegroups.com> wrote:
> 
> Hi all
> I woke up dizzy and have had it all day. Ive had this before so not to 
> concerned yet. 
> Could be my potassium is up. 
> I hope everyone is good tonight. 
> 
> My Motto: Faith and Pills❤️
> With Jeanie 18,s Chi
> Dx 1/2004. CML Leukemia
> Started Gleevec 2/2004
> Started Tasigna 9/2009
> Started Sprycel 11/2009
> Started Ponatinib January 2015
> Dr Balducci Moffitt Cancer Center
> 
> -- 
> -- 
> [CMLHope]
> A support group of http://cmlhope.com
> -
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> You received this message because you are subscribed to the Google Groups 
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Re: [CMLHope] Dizzy all day

['Icandoallttc' via CMLHope]

Great news Marty!! Not that you have been in the hospital but that you are 
better. 
Thanks for info in dizzy spells. Mine is gone for now.  

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Mar 17, 2016, at 8:22 PM, Marty Gartenberg <wa2...@gmail.com> wrote:
> 
> Don't worry, sounds like vertigo. Both my wife send a l also get it from time 
> to time. It should pass in a day or so.
> 
> Some news from me. I have been in the hospital for the past four days 
> concerning my Afibs. To make a long story somewhat short I do not have any 
> more Afibs due to some new medications. I am now feeling very well. They are 
> going to fine tune some of the medications,and I should be discharging me 
> tomorrow.
> 
> 18's
> 
> Marty
> 
>> On Wednesday, March 16, 2016, 'Icandoallttc' via CMLHope 
>> <cmlhope@googlegroups.com> wrote:
>> Hi all
>> I woke up dizzy and have had it all day. Ive had this before so not to 
>> concerned yet.
>> Could be my potassium is up.
>> I hope everyone is good tonight.
>> 
>> My Motto: Faith and Pills❤️
>> With Jeanie 18,s Chi
>> Dx 1/2004. CML Leukemia
>> Started Gleevec 2/2004
>> Started Tasigna  9/2009
>> Started Sprycel 11/2009
>> Started Ponatinib January 2015
>> Dr Balducci Moffitt Cancer Center
>> 
>> --
>> --
>> [CMLHope]
>> A support group of http://cmlhope.com
>> -
>> 
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Re: [CMLHope] Dizzy all day

['Icandoallttc' via CMLHope]

Will a heart pacer help with that?

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Mar 18, 2016, at 9:31 AM, Marty Gartenberg <wa2...@gmail.com> wrote:
> 
> Well unfortunately my Afibs came back last night. They 're going to discuss 
> this with me today to see what the next will be
> 
> 18s,
> 
> Marty
> 
>> On Thursday, March 17, 2016, Myvety2k via CMLHope <cmlhope@googlegroups.com> 
>> wrote:
>> Marty, that's good news, glad to here it.
>>  
>> greenie
>>  
>> In a message dated 3/17/2016 8:22:36 P.M. Eastern Daylight Time, 
>> wa2...@gmail.com writes:
>> Don't worry, sounds like vertigo. Both my wife send a l also get it from 
>> time to time. It should pass in a day or so.
>> 
>> Some news from me. I have been in the hospital for the past four days 
>> concerning my Afibs. To make a long story somewhat short I do not have any 
>> more Afibs due to some new medications. I am now feeling very well. They are 
>> going to fine tune some of the medications,and I should be discharging me 
>> tomorrow.
>> 
>> 18's
>> 
>> Marty
>> 
>>> On Wednesday, March 16, 2016, 'Icandoallttc' via CMLHope 
>>> <cmlhope@googlegroups.com> wrote:
>>> Hi all
>>> I woke up dizzy and have had it all day. Ive had this before so not to 
>>> concerned yet.
>>> Could be my potassium is up.
>>> I hope everyone is good tonight.
>>> 
>>> My Motto: Faith and Pills❤️
>>> With Jeanie 18,s Chi
>>> Dx 1/2004. CML Leukemia
>>> Started Gleevec 2/2004
>>> Started Tasigna  9/2009
>>> Started Sprycel 11/2009
>>> Started Ponatinib January 2015
>>> Dr Balducci Moffitt Cancer Center
>>> 
>>> --
>>> --
>>> [CMLHope]
>>> A support group of http://cmlhope.com
>>> -
>>> 
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>> 
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[CMLHope] Dizzy all day

['Icandoallttc' via CMLHope]

Hi all
I woke up dizzy and have had it all day. Ive had this before so not to 
concerned yet. 
Could be my potassium is up. 
I hope everyone is good tonight.  

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

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Re: [CMLHope] Digest for cmlhope@googlegroups.com - 1 update in 1 topic

['Icandoallttc' via CMLHope]

Hi Sue and i really enjoyed the video.  It was amazing!! 
Thanks. 

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Mar 4, 2016, at 5:19 AM, Sue  wrote:
> 
> Lottie and Zavie were my mentors
>  
> I was #1197 in the Zavies Zero Club
>  
> So Kristen I was somewhat behind your #69
>  
> I miss   Lotties friendship and Zavies Photos he would send each week
>  
> The importance of the photos – were two fold – to see that Zavie was AOK but 
> also that he was living with CML and not Living It his CML – Great lesson
>  
> I enjoyed his Yippee Yahoos when one became PCRU – [ Now named MRD – Minimum 
> Residual Disease ]  even when PCRU
>  
> I was an Ambassador for Ride to Conquer Cancer and reference both Lottie and 
> Zavie in my speech to riders
>  
> https://www.youtube.com/watch?v=4DhL8FQLRKw
>  
> You may like to listen
>  
> Those of us who are the living are certainly those two guys LEGACY
>  
> Sue 
> (Australia)
>   
>  
>  
>  
> From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] 
> Sent: Friday, 4 March 2016 6:13 PM
> To: Digest recipients 
> Subject: [CMLHope] Digest for cmlhope@googlegroups.com - 1 update in 1 topic
>  
> cmlhope@googlegroups.com
> Google Groups
> 
> Topic digest 
> View all topics
> · Digest for cmlhope@googlegroups.com - 13 updates in 3 topics - 1 
> Update
> Digest for cmlhope@googlegroups.com - 13 updates in 3 topics
> Kristin Lieberman : Mar 03 07:07AM -0800 
> 
> I remember Lottie and Jimmy. I adored Zavie, and he called me a few times in 
> the old days just to check on me. I was #69 in Zavie's Zero Club.
>  
> Sent from my iPhone
>  
> Back to top
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>  
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Re: [CMLHope] B vitamins, the good and the bad!

['Icandoallttc' via CMLHope]

Hi Peg and so glad to hear from you. So sorry about all your problems.   I will 
keep and eye out for B6.  I have a bad side pain under my right rib and tests 
don't show anything.  
They are also adding potassium to everything and I have to watch because my 
potassium has a tendency to go high.  
I pray everything gets better for you.  Fight in sweet warrior!!!

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Mar 9, 2016, at 12:12 PM, peg  wrote:
> 
> Hi Everyone, sorry I disappeared for a minute again.  On top of 6 years with 
> CML and five other cancers, 26 years with Multiple Sclerosis, and plain old 
> age catching up with me, I am also sole care giver for my husband who has 
> acquired brain damage and is insulin dependent.  He has been difficult these 
> past few weeks, sort of like an angry out of control five year old!  I am 
> scrambling right now to maintain a small business contract that is the 
> difference between us keeping or losing our home, so my plate has been really 
> full.  
> 
> However, when I caught a rare "me" moment to catch up on the chats, I 
> happened to see one about burning leg pain, that was described exactly like 
> mine.  Every night it was like someone poured gasoline on my feet and lit 
> them on fire! It is neuropathy. Hard to say if it is from my MS, Gleevec I 
> took for 8 months, Sprycel for 3 years or Tasigna that I am on now for the 
> past two, or even from the permanent malapsorbtion syndrome, a gift left from 
> a really bad reaction to Gleevec.  However, in my search for relief, here is 
> what I learned about B vitamins.  
> 
> B6 is somewhat neurotoxic and can cause nerve pain, and make existing nerve 
> pain worse.  This is pyridoxine the supplement, not vit B6 derived from 
> natural food sources.  But sadly, someone decided B6 was a good thing and the 
> B6 supplement pyridoxine is jammed into everything now!  It was in my 
> multi-vitimin, my immune booster, an amino acid supplement I take, and even 
> in the nutritional yeast I cook with!  Start reading those labels!  Too high 
> a level of B6 is bad, and any amount of pyridoxine will make neuropathy and 
> nerve pain worse.  
> 
> B12 is the other side of that!  Not enough  B12 can cause nerve pain and 
> neuropathy.  And studies have shown that a blood test for B12 may show as 
> normal when there is still actually a deficiency. Additionally some people 
> believe that the only way to supplement B12 is with an injection, however, 
> clinical studies have shown that oral B12 is just as effective.  
> 
> Most of my neuropathy, and other nerve pain from a spinal fracture, was 
> dramatically reduced by eliminating pyridoxine from my diet...it took a 
> couple of weeks, but the results have been lasting for a couple of months 
> now, and if I accidentally get into pyridoxine, I notice the difference by 
> the very next day! This week I started B12 and it's showing an additional 
> improvement also.
> 
> Just wanted to share this in case it will be of benefit to anyone else...I 
> think there is a tendency for doctors to miss the forest for the trees, and 
> think that everything is related to CML, the treatment, or in my case also 
> the other cancers or my MS, and assume the situation is not correctable or 
> requires more drugs. I live in Los Angeles where there is an abundance of 
> specialist.  I was blessed to have been directed first to a neuromuscular 
> specialist who shared the B6 "secret" with me and then a gastric nutritional 
> specialist who shared about other vitamins, like B12.  
> 
> Hope sharing this helps someone else.
> 
> Fight on!
> peg
> -- 
> -- 
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Re: [CMLHope] Hey, what happened to everyone?

['Icandoallttc' via CMLHope]

Hi Beth and thanks for asking. 
The side pain is ongoing and they can't find out what is causing it.  I had a 
chest X-ray but it revealed all is good.  I feel it's to do with gallbladder 
surgery I had years ago.  Back is on the mend so I'm fighting on.  Blessing and 
love

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Feb 29, 2016, at 8:02 PM, bkbarney via CMLHope <cmlhope@googlegroups.com> 
> wrote:
> 
> Sounds like overall pretty good news Jeanie. How is the side pain?
> 
> 18's and hugs, Beth
> 
> 
> -Original Message-
> From: Marty Gartenberg <wa2...@gmail.com>
> To: cmlhope <cmlhope@googlegroups.com>
> Sent: Mon, Feb 29, 2016 6:35 pm
> Subject: Re: [CMLHope] Hey, what happened to everyone?
> 
> Hi Jeanie,
> 
> Good to hear that your counts were good, and don't worry about your platelets 
> or WBC. It all works out in the wash.
> 
> My WBC was two weeks ago 1.8 and last week it was 2.1 So like I said it all 
> works out in the wash.
> 
> As far as faith and pills go, yes the faith always works out but which one of 
> the pills that I take about 63 of them a week can I count on for bringing me 
> the combination of both faith and those pills?
> 
> Well I do have to say that without most of them my new kidney would shrivel 
> up and reject, so I guess that your absolutely right.
> 
> You see Jeanie I learned a valuable lesson from you
> 
> 18's
> 
> Marty
> 
>> On Mon, Feb 29, 2016 at 7:32 PM, Marty Gartenberg <wa2...@gmail.com> wrote:
>> Hi Jeanie,
>> 
>> Good to hear that your counts were good, and don't worry about your 
>> platelets or WBC. It all works out in the wash.
>> 
>> My WBC was two weeks ago 1.8 and last week it was 2.1 So like I said it all 
>> works out in the wash.
>> 
>> As far as faith and pills go, yes the faith always works out but which one 
>> of the pills that I take about 63 of them a week can I count on for bringing 
>> me the combination of both faith and those pills?
>> 
>> Well I do have to say that without most of them my new kidney would shrivel 
>> up and reject, so I guess that your absolutely right.
>> 
>> You see Jeanie I learned a valuable lesson from you
>> 
>> 18's
>> 
>> Marty 
>> 
>>> On Mon, Feb 29, 2016 at 5:53 PM, 'Icandoallttc' via CMLHope 
>>> <cmlhope@googlegroups.com> wrote:
>>> Hi Marty and everyone,
>>> I hope everyone is good. My blood was good last check up.  Platelets were a 
>>> little lower than I like: 177. WBC was higher than I like: 9.  However I am 
>>> thankful for Ponatinib for putting me in remission once more.  Faith and 
>>> pills.   God bless
>>> 
>>> My Motto: Faith and Pills❤️
>>> With Jeanie 18,s Chi
>>> Dx 1/2004. CML Leukemia
>>> Started Gleevec 2/2004
>>> Started Tasigna  9/2009
>>> Started Sprycel 11/2009
>>> Started Ponatinib January 2015
>>> Dr Balducci Moffitt Cancer Center
>>> 
>>> On Feb 29, 2016, at 10:00 AM, Marty Gartenberg <wa2...@gmail.com> wrote:
>>> 
>>> Why the silence? I miss everyone.
>>> 
>>> 18's,
>>> 
>>> Marty
>>> -- 
>>> -- 
>>> [CMLHope]
>>> A support group of http://cmlhope.com
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>>>  
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>>> --- 
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>>> To un

Re: [CMLHope] Re: Hey, what happened to everyone?

['Icandoallttc' via CMLHope]

Hi Richard.   So glad to hear you are well.  Warm in fl but we had a few cold 
days.  Fruit trees are full of blooms and I think the danger of frost is over.  
 


My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Mar 1, 2016, at 12:09 AM, Richard H  wrote:
> 
> Sorry about the silence.  Everything is OK here.  We have had some lovely 
> early spring weather here and I am enjoying the refreshing of Mother Earth. 
> Lots of wild fire danger for lack if moisture, but we may have something wet 
> (rain, snow) by tomorrow night.  
> 
> All counts remain in range with my program and we are building to the high 
> side of Hemoglobin so all is good.
> 
> Richard H.
> 
>> On Monday, February 29, 2016 at 9:00:33 AM UTC-6, wa2yyx wrote:
>> Why the silence? I miss everyone.
>> 
>> 18's,
>> 
>> Marty
> 
> -- 
> -- 
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Re: [CMLHope] Re: Hey, what happened to everyone?

['Icandoallttc' via CMLHope]

So sorry about your faithful friend.  I pray he has a peaceful end.  

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Mar 1, 2016, at 8:16 AM, Norm  wrote:
> 
> I am still alive and kicking but one of my kickers is giving me fits. I think 
> it is plantar fasciitis.
> 
> I haven't posted in awhile and miss Millie may she rest in peace.
> Jeanie is my cruise mentor and my wife and I along with a few other friends 
> just got back a couple of weeks ago from a 7 day cruise to Jamaica, Cayman, 
> and Cozumel.
> 
> We were busy with one of my cousin staying here quite often  while he was 
> being treated for stage 4 Melanoma, he passed and is walking with Jesus now. 
> Way too young and such a very good person.
> 
> My beloved dachshund, Hans, turned 12  yesterday. About a month ago we were 
> given the devastating news that he has lymphoma. I never knew it would be so 
> difficult to have to deal with the knowledge that one day, much sooner than 
> expected, I would have to ease his way to a comfortable ending.
> I dread this as he was my buddy and comfort while I was recovering from my 
> relapse of CML.
> He is being spoiled even more than ever now and will be until that time 
> comes. Millie would understand.
> 
> April 1st will mark 13 years since my diagnosis and the start of Gleevec.
> As some know, I relapsed and Gleevec no longer worked. 
> I was fortunate enough to get in the clinical trial for AMN107 during the 
> phase 1 study.
> As you can tell, it worked but not before I entered blast and was one very 
> sick puppy. I believe that one night the angel of death came for me and for 
> some reason let me stay.
> All I know is Dr Kantarjian tells me to thank God and I do.
> 
> My son has finished his tour of duty with the USMC and has been discharged as 
> a Sargent with the Achievement medal. We are extremely proud of our son, and 
> our daughter who is still teaching photography to high schoolers.
> 
> I have been training my replacements at work so I can eventually retire. I am 
> ready but they are not.lol..
> 
> My macular degeneration is stable and I have not had any shots in my eye for 
> almost  6 months. Still legally blind and that will not change during my 
> lifetime I suppose.
> 
> I have been playing a lot of golf with my younger brother and we are having a 
> great time together. He is a good brother that will come and pick me up and 
> take me golfing even if it means spending the whole day with me. Life is good.
> 
> This past December marked 11 years that I have been on Tasigna. I have never 
> been undetectable but it is generally only a few cells in 10 thousand.
> 
> I will try to check in more often but life has been keeping me so busy.
> 
> Blessings to all
> Norm
> 
>> On Monday, February 29, 2016 at 9:00:33 AM UTC-6, wa2yyx wrote:
>> Why the silence? I miss everyone.
>> 
>> 18's,
>> 
>> Marty
> 
> -- 
> -- 
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Re: [CMLHope] Re: Hey, what happened to everyone?

['Icandoallttc' via CMLHope]

Hi Norm and so happy to hear from you. I miss our Tasigna group.  
I lost my remission last year and am now on Ponatinib.  It has my blood doing 
good with few side effect.   
That foot problem can hurt!!! 
Rub a lot of castor oil on it and soak in Epsom salts.  
I had the heel probably a few years ago and it lasted for 2 years.  Put a 
castor oil pack on at night.  
I haven't been able to cruise lately and miss it.  We are planning a Christmas 
cruise if my health holds up. 
Do you hear from our Tasigna group??
Sounds like you are doing great!!! 
I'm glad your eyes are better.  
Stay in touch and yes, I sure miss Millie
Love 

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Mar 1, 2016, at 8:16 AM, Norm  wrote:
> 
> I am still alive and kicking but one of my kickers is giving me fits. I think 
> it is plantar fasciitis.
> 
> I haven't posted in awhile and miss Millie may she rest in peace.
> Jeanie is my cruise mentor and my wife and I along with a few other friends 
> just got back a couple of weeks ago from a 7 day cruise to Jamaica, Cayman, 
> and Cozumel.
> 
> We were busy with one of my cousin staying here quite often  while he was 
> being treated for stage 4 Melanoma, he passed and is walking with Jesus now. 
> Way too young and such a very good person.
> 
> My beloved dachshund, Hans, turned 12  yesterday. About a month ago we were 
> given the devastating news that he has lymphoma. I never knew it would be so 
> difficult to have to deal with the knowledge that one day, much sooner than 
> expected, I would have to ease his way to a comfortable ending.
> I dread this as he was my buddy and comfort while I was recovering from my 
> relapse of CML.
> He is being spoiled even more than ever now and will be until that time 
> comes. Millie would understand.
> 
> April 1st will mark 13 years since my diagnosis and the start of Gleevec.
> As some know, I relapsed and Gleevec no longer worked. 
> I was fortunate enough to get in the clinical trial for AMN107 during the 
> phase 1 study.
> As you can tell, it worked but not before I entered blast and was one very 
> sick puppy. I believe that one night the angel of death came for me and for 
> some reason let me stay.
> All I know is Dr Kantarjian tells me to thank God and I do.
> 
> My son has finished his tour of duty with the USMC and has been discharged as 
> a Sargent with the Achievement medal. We are extremely proud of our son, and 
> our daughter who is still teaching photography to high schoolers.
> 
> I have been training my replacements at work so I can eventually retire. I am 
> ready but they are not.lol..
> 
> My macular degeneration is stable and I have not had any shots in my eye for 
> almost  6 months. Still legally blind and that will not change during my 
> lifetime I suppose.
> 
> I have been playing a lot of golf with my younger brother and we are having a 
> great time together. He is a good brother that will come and pick me up and 
> take me golfing even if it means spending the whole day with me. Life is good.
> 
> This past December marked 11 years that I have been on Tasigna. I have never 
> been undetectable but it is generally only a few cells in 10 thousand.
> 
> I will try to check in more often but life has been keeping me so busy.
> 
> Blessings to all
> Norm
> 
>> On Monday, February 29, 2016 at 9:00:33 AM UTC-6, wa2yyx wrote:
>> Why the silence? I miss everyone.
>> 
>> 18's,
>> 
>> Marty
> 
> -- 
> -- 
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Re: [CMLHope] Hey, what happened to everyone?

['Icandoallttc' via CMLHope]

Hi all.  
My sisters legs and feet swell really bad. She takes 2 diuretics.  She has 
never been on any tkis. 
She recently chose to have leg vein ablation.  She says this has really helped. 
 Maybe you could look into it.  She had to have a heart pacer put in also. 
Good luck. 
My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Mar 2, 2016, at 4:20 AM, sherri swanson  
> wrote:
> 
> Hi Marty, 
> 
> My doctor put me on Furosemide 20mg & potassium as I have low potassium to 
> begin with, and at 20mg it did nothing. SO of course, he increased it to 40mg 
> and still nothing. He switched me to a different drug Spironalactone, generic 
> for Aldactone and still no trips to the bathroom and the swelling did not 
> abate. My legs are just stubborn. So that is when all the testing started and 
> current I am not on any diuretic as none of them have produced a result. 
> Strange huh? Leave it to me to be difficult. But with all the other medical 
> issues I have some not so common, the doctors are doing a bunch of tests with 
> the hopes of find the culprit. 
> 
> I have to tell ya, I would welcome a run for the bathroom about now. LOL 
> Anything to get rid of this excess water. 
> 
> As always, your input is most welcome. 
> 
> Cheers, 
> 
> Sherri
>  
> 
>> On Tue, Mar 1, 2016 at 10:12 PM, 'judy' via CMLHope 
>>  wrote:
>> Hello  This is Judy I forgot my password s I ave to wait till some one 
>> writes  all is good t this end we got about a foot of snow and its beautiful 
>>  Just love it.  Have been off Gleevec for a few years and stillgoing  Good  
>> Keeping up with blood tests because of other things buT all is Good with the 
>> counts.   Take care and if you want some snow come and get it  HAha   JUDY
>> 
>> 
>> On Monday, February 29, 2016 10:00 AM, Marty Gartenberg  
>> wrote:
>> 
>> 
>> Why the silence? I miss everyone.
>> 
>> 18's,
>> 
>> Marty
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Re: [CMLHope] Info update

['Icandoallttc' via CMLHope]

Hi Susan and all,
Good to hear your uplifting voice of hope and love.  I had my annual checkup 
with my PCD today.  Every thing is pretty much the same.  I Had blood drawn and 
will get the results tomorrow.  Also they found some nodes on my lungs a few 
months ago so I will do a chest X-ray tomorrow. I have no trouble breathing so 
I don't think anything is wrong. 
Pain is still bad but I'm hoping they can find the cause soon. 
I hope every one is good tonight. 

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Feb 13, 2016, at 3:27 PM, 'Susan Zimmerman' via CMLHope 
>  wrote:
> 
> Dear Beth and Marty,
> 
> Sweet Beth is one of my inspirations, in case you didn't know.  I pray all is 
> well with you?!  We need an update.  Happy Valentine's Day.
> 
> Marty, I sure hope your dire circumstances have improved this week, even just 
> a tiny little bit.  A tiny bit is to rejoice over!  I love all you guys so 
> much, and we truly are family.  Happy Valentine's Day and get your wife 
> something special.
> 
> Jeanie, I sure do hope your side pain is better, too.  Even just a tiny bit!  
> That V.Day will lift your spirits and that you know you are loved!
> 
> Jon, I'm expecting good results for your next testing.  I've gotta go soon 
> myself to find out if my numbers are staying low.  Happy Vday!
> 
> The rest that we haven't heard from latelykeep in touch with us!  I don't 
> read posts every day, but will eventually!
> 
> So far I've gotten a birthday balloon, a big neat card, and many kisses and 
> vows of love from my hubby.  Oh, also flowers!  We've been celebrating for 
> two weeks.  e-cards are so easy to send, and I have fun doing it, so he's 
> gotten candy twice and a physical card, and many e-mailed cards!  He knows 
> better than to buy me candy, it's poison for a diabetic.  I eat dark 
> chocolate anyway, lol.
> 
> Blessings and 18's for life of course, Marty,
> 
> Susan F. Zimmerman
> "Look among the nations and watch; be utterly astounded!  For I will work a 
> work in your days which you would not believe, though it were told you."  
> Hab. 1:5
> 
> 
> -Original Message-
> From: Marty Gartenberg 
> To: cmlhope 
> Sent: Fri, Feb 12, 2016 9:29 pm
> Subject: Re: [CMLHope] Info update
> 
> Susan, Susan what am I to do with you? you are so sweet and for this. I have 
> no doubt that everything will turn out well for you and your family just as 
> is has been doing for me, Shelly and our children. I'm sure that you can 
> imagine everything that I have been through and also so have you.
> 
> I also see that you are using 18"s as you end all of your posts. Do you know 
> why? Because we and a lot of others share something. Life
> 
> 18's again.
> 
> Marty
> 
> 
> 
> 
>> On Fri, Feb 12, 2016 at 1:14 PM, 'Susan Zimmerman' via CMLHope 
>>  wrote:
>> Dear Marty,
>> 
>> So sorry to hear about the mouth sores and low wbc.  UGH!!!  We are all 
>> rooting for you to beat this problem with immunity ASAP.  You are not 
>> complaining, just stating a reason for us to pray for you!  If we don't know 
>> about it we can't zero in on it in intercessory prayer.  You've got my 
>> prayers and I know those of everyone on here who prays to the most High God..
>> 
>> Two trips to Chicago have so far found nothing really wrong with my blood 
>> that would cause the stroke.  This time they know it's from the bosulif, but 
>> waiting for results from the MRA and MRI that also happened.
>> 
>> So I'm enjoying time off the TKI, and living life to the fullest every daY.  
>> EVERYONE have a wonderful Valentine weekend, please.  If ya don't have a 
>> sweetie, know that you can treat yourself better than usual for the 
>> occasion!  (Bubble bath, massage, favorite meal, etc. just for you).  The 
>> rest of ya try to take good care of your significant other!  (Of course 
>> don't fall for the media's need to spend lots of money...lol)
>> 
>> Heartfelt love and 18's,
>> 
>> Susan F. Zimmerman
>> 
>> 
>> -Original Message-
>> From: Marty Gartenberg 
>> To: cmlhope 
>> Sent: Fri, Feb 12, 2016 4:04 pm
>> Subject: Re: [CMLHope] Info update
>> 
>> Ok, let's see what happens at your next blood test.
>> I just had one this morning and sorry to say my WBC was only 1.87 so that 
>> puts me having a problem with immunity but I know that it is coming from the 
>> CMV virus that I am having so I have to be very careful until the reduced 
>> medication starts to work again. In the mean time I have gotten some 
>> terrible mouth sores just like I got when I had the bone marrow transplant 
>> caused by all of the Chemo and radiation. Something that I will never 
>> forget. Believe it or not that was by far the worst 

Re: [CMLHope] Info update

['Icandoallttc' via CMLHope]

I hope every thing will be good John.  Did they treat your CML while you were 
in the hospital?  Did they increase your ponatinib to get the counts down?
Do they do PCR test on your blood?
I got a bill from Moffitt and it was over $2000. I found out it is the PCR test 
that's so expensive.  They never gave me the results from it. 
My insurance paid most of the bill.  
Blessings. 


My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Feb 12, 2016, at 4:04 PM, Marty Gartenberg  wrote:
> 
> Ok, let's see what happens at your next blood test.
> I just had one this morning and sorry to say my WBC was only 1.87 so that 
> puts me having a problem with immunity but I know that it is coming from the 
> CMV virus that I am having so I have to be very careful until the reduced 
> medication starts to work again. In the mean time I have gotten some terrible 
> mouth sores just like I got when I had the bone marrow transplant caused by 
> all of the Chemo and radiation. Something that I will never forget. Believe 
> it or not that was by far the worst part of it. However I just try not to 
> complain about it. And do you know why? I'm still alive today.
> 
> And now you know what 18's stands for... Life!
> 
> So I bid you many more 18's.
> 
> Marty   
> 
>> On Fri, Feb 12, 2016 at 5:49 AM, John Barrons  wrote:
>> Hi My wbc last Tuesday were 4.2, platelets 43 and hemo 103. I will next have 
>> a cbc a week this Tuesday. John
>> 
>> Sent from my iPad
>> 
>>> On Feb 12, 2016, at 6:59 AM, Marty Gartenberg  wrote:
>>> 
>>> Hi John,
>>> 
>>> What are your WBC now? I know a man who lives in Canada a very long time 
>>> ago actually more then 35 years ago and he never took any TKI's but he did 
>>> take something and it did "burn out his Leukemia" but unfortunately he has 
>>> to have blood transfusions I think every two weeks. He is the longest 
>>> surviving person in this world.
>>> 
>>> I probably am in there as well logging in going on 27 years after having a 
>>> bone marrow transplant.
>>> 
>>> Different people react to different things and sometimes some of them 
>>> defies the logic of these things that are just meant to be. Hey you seem to 
>>> be one of them
>>> Good luck to you!
>>> 
>>> Remember what 18's stands for.
>>> 
>>> Marty  
>>> 
 On Thu, Feb 11, 2016 at 8:01 AM,  wrote:
 I am taking ponatinib like Jeanie in Tampa. I need to take only one pill a 
 week to keep  the counts low. the counts do fluctuate from time to time. 
 There does not seem to an answer for the white blood cells to have 
 increased so suddenly. My oncologist did not think it was a change to 
 blast phase. So I go once a week or once every two weeks to check them. 
 John B.
 
 
 On Wednesday, February 10, 2016 11:06 PM, Marty Gartenberg 
  wrote:
 
 
 Hi John,
 
 First let me say hello to your wife, and believe me I personally know what 
 she has been going through.
 
 Now what I can't understand why your white blood count went over 100,000. 
 And what pill have you been taking? Usually you need to be taking more 
 then 1 pill and that should be every day. So John I am really puzzled.
 
 I wish you as well as your wife the very best, because of mainly what you 
 wrote. Yes, life is good.
 
 If you have been reading any of my posts I always end them with 18's which 
 is a symbol for life.
 
 18's,
 
 Marty
 
 On Wed, Feb 10, 2016 at 4:45 PM, John Barrons  wrote:
 Hi Jeanie and to all: Well, where do I start. Before last Christmas, I was 
 not feeling very well. My oncologist said if I felt worse go to emergency, 
 which I did on Dec 26. I had pneumonia and as I result my heart was having 
 trouble. In addition, my white blood count went over 100,000. I was in 
 hospital until Jan 16 when I was transferred to a rehab centre to gain 
 back some strength. I arrived back at home last Saturday, so glad to be 
 home I can't begin to say. All is well as far as the things that were 
 wrong. Mind you I have to gain a lot of weight back. The leukemia is back 
 to normal and I am on 1 pill per week. That was along time to be away and 
 I was difficult for my wife also. Life is good John B
 
 Sent from my iPad
 
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Re: [CMLHope] Info update

['Icandoallttc' via CMLHope]

Hi John and I felt like something was wrong as we hadn't heard from you. I'm 
glad you are back home and cml is good.  
Have you had a pneumonia shot. I got mine many years ago and a booster when I 
was in the hospital a few years ago. 
I am still on 1 15 meg pill daily. 
You are the first person I ever met that only takes 1 pill weekly so that is 
why Marty was wondering.  
That was a long hospital stay.  Was that all for the pneumonia?
Give your wife good wishes from me and hang in there. 

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Feb 10, 2016, at 7:45 PM, John Barrons  wrote:
> 
> Hi Jeanie and to all: Well, where do I start. Before last Christmas, I was 
> not feeling very well. My oncologist said if I felt worse go to emergency, 
> which I did on Dec 26. I had pneumonia and as I result my heart was having 
> trouble. In addition, my white blood count went over 100,000. I was in 
> hospital until Jan 16 when I was transferred to a rehab centre to gain back 
> some strength. I arrived back at home last Saturday, so glad to be home I 
> can't begin to say. All is well as far as the things that were wrong. Mind 
> you I have to gain a lot of weight back. The leukemia is back to normal and I 
> am on 1 pill per week. That was along time to be away and I was difficult for 
> my wife also. Life is good John B
> 
> Sent from my iPad
> 
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Re: [CMLHope] Info update

['Icandoallttc' via CMLHope]

Hi Marty. 
Just want to explain why WBC and platelets can rise quickly with cml.  
this has happened to me 3 times and it is because the tki you are taking quit 
working and you lose your remission.   It is caused by mutations.  I am on my 
4th tki now and running out of options if this one quits working. 
Wishing every one blessings.  

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Feb 10, 2016, at 11:06 PM, Marty Gartenberg  wrote:
> 
> Hi John,
> 
> First let me say hello to your wife, and believe me I personally know what 
> she has been going through.
> 
> Now what I can't understand why your white blood count went over 100,000. And 
> what pill have you been taking? Usually you need to be taking more then 1 
> pill and that should be every day. So John I am really puzzled.
> 
> I wish you as well as your wife the very best, because of mainly what you 
> wrote. Yes, life is good.
> 
> If you have been reading any of my posts I always end them with 18's which is 
> a symbol for life.
> 
> 18's,
> 
> Marty
> 
>> On Wed, Feb 10, 2016 at 4:45 PM, John Barrons  wrote:
>> Hi Jeanie and to all: Well, where do I start. Before last Christmas, I was 
>> not feeling very well. My oncologist said if I felt worse go to emergency, 
>> which I did on Dec 26. I had pneumonia and as I result my heart was having 
>> trouble. In addition, my white blood count went over 100,000. I was in 
>> hospital until Jan 16 when I was transferred to a rehab centre to gain back 
>> some strength. I arrived back at home last Saturday, so glad to be home I 
>> can't begin to say. All is well as far as the things that were wrong. Mind 
>> you I have to gain a lot of weight back. The leukemia is back to normal and 
>> I am on 1 pill per week. That was along time to be away and I was difficult 
>> for my wife also. Life is good John B
>> 
>> Sent from my iPad
>> 
>> --
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Re: [CMLHope] Thanks!

['Icandoallttc' via CMLHope]

Hi to all and hope every one is good tonight.  Would love to hear from you 
John. 
I decided to research the word Chi as it seemed very interesting. 
In Chinese culture it means energy force and it is a foot in Chinese 
measurement.  It is also a Surname. The most interesting thing I found was that 
in Chinese mythology it means dragon.  So let us be a Chi and slay this 
leukemia with every weapon we can find.  
I believe in faith and pills but maybe some Chi can help.  
❤️❤️❤️

My Motto: Faith and Pills❤️
With Jeanie 18,s 
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Feb 9, 2016, at 11:18 AM, peg  wrote:
> 
> Hi Marty,
> I am well familiar with the Chai symbol, I have many on necklaces left to me 
> by my mother. This symbol and what it stands for is an important part of our 
> heritage, my family being immigrants from Russia, Prussia and Poland prior to 
> the holocaust. My mother was a life warrior in her own right...having 
> suffered for 33 years, and having lost her only sibling at a very young age, 
> from Crohn's disease. She fought a good fight and was always the strongest 
> person I knew.  I lost her ten years ago at a very young 68 years of age, and 
> miss her very much.  In times when my struggle seems insurmountable I draw on 
> the strength I remember from my mother. The Chai reminds us that no matter 
> what the hardship, as long as we have breath, we have life. l'chaim!  
> 
>> On Monday, February 8, 2016 at 2:54:04 PM UTC-8, wa2yyx wrote:
>> Hi Peg,
>> 
>> Let me tell you a story about 18's which is actually represented by Chi 
>> which also means life. One person that I once helped a long time ago, and it 
>> has been such a long time ago that I just can't remember her name, but if 
>> she sees this now then hopefully she will get in touch with me.
>> 
>> She once asked what is the symbol for life. I told her that it was life but 
>> she asked me is there and physical symbol? so I mentioned that there is and 
>> it is spoken as Chi, and there is a physical symbol and that it is a peace 
>> of jewelry and is usually made of gold and usually is on a gold chain that 
>> hangs around your neck 
>> 
>>> On Mon, Feb 8, 2016 at 9:51 AM, peg  wrote:
>>> Thanks everyone, you are all still as inspiring and encouraging as you were 
>>> for me in the beginning.  And Marty...it was no mystery to me why there are 
>>> so many people signing off with 18's now...it is respect for your 
>>> unwavering strength and support! Today IS the day we stop waiting for the 
>>> storm to pass and learn to dance in the rain!  
>>> 
>>> Fight on!
>>> peg
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Re: [CMLHope] Thanks!

['Icandoallttc' via CMLHope]

Forgot to say my back has been hurting for about 2 weeks.  Been putting heat on 
it. Still taking 15 meg ponatinib daily.  Seems to be working. Prayers every 
one. B

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Feb 10, 2016, at 5:10 PM, Icandoallttc  wrote:
> 
> Hi to all and hope every one is good tonight.  Would love to hear from you 
> John. 
> I decided to research the word Chi as it seemed very interesting. 
> In Chinese culture it means energy force and it is a foot in Chinese 
> measurement.  It is also a Surname. The most interesting thing I found was 
> that in Chinese mythology it means dragon.  So let us be a Chi and slay this 
> leukemia with every weapon we can find.  
> I believe in faith and pills but maybe some Chi can help.  
> ❤️❤️❤️
> 
> My Motto: Faith and Pills❤️
> With Jeanie 18,s 
> Dx 1/2004. CML Leukemia
> Started Gleevec 2/2004
> Started Tasigna  9/2009
> Started Sprycel 11/2009
> Started Ponatinib January 2015
> Dr Balducci Moffitt Cancer Center
> 
>> On Feb 9, 2016, at 11:18 AM, peg  wrote:
>> 
>> Hi Marty,
>> I am well familiar with the Chai symbol, I have many on necklaces left to me 
>> by my mother. This symbol and what it stands for is an important part of our 
>> heritage, my family being immigrants from Russia, Prussia and Poland prior 
>> to the holocaust. My mother was a life warrior in her own right...having 
>> suffered for 33 years, and having lost her only sibling at a very young age, 
>> from Crohn's disease. She fought a good fight and was always the strongest 
>> person I knew.  I lost her ten years ago at a very young 68 years of age, 
>> and miss her very much.  In times when my struggle seems insurmountable I 
>> draw on the strength I remember from my mother. The Chai reminds us that no 
>> matter what the hardship, as long as we have breath, we have life. l'chaim!  
>> 
>>> On Monday, February 8, 2016 at 2:54:04 PM UTC-8, wa2yyx wrote:
>>> Hi Peg,
>>> 
>>> Let me tell you a story about 18's which is actually represented by Chi 
>>> which also means life. One person that I once helped a long time ago, and 
>>> it has been such a long time ago that I just can't remember her name, but 
>>> if she sees this now then hopefully she will get in touch with me.
>>> 
>>> She once asked what is the symbol for life. I told her that it was life but 
>>> she asked me is there and physical symbol? so I mentioned that there is and 
>>> it is spoken as Chi, and there is a physical symbol and that it is a peace 
>>> of jewelry and is usually made of gold and usually is on a gold chain that 
>>> hangs around your neck 
>>> 
 On Mon, Feb 8, 2016 at 9:51 AM, peg  wrote:
 Thanks everyone, you are all still as inspiring and encouraging as you 
 were for me in the beginning.  And Marty...it was no mystery to me why 
 there are so many people signing off with 18's now...it is respect for 
 your unwavering strength and support! Today IS the day we stop waiting for 
 the storm to pass and learn to dance in the rain!  
 
 Fight on!
 peg
 -- 
 -- 
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 A support group of http://cmlhope.com
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>> 
>> -- 
>> -- 
>> [CMLHope]
>> A support group of http://cmlhope.com
>> -
>>  
>> You received this message because you are subscribed to the Google Groups 
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>> To post to this group, send email to CMLHope@googlegroups.com
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You received this message because you are subscribed to the Google 

Re: [CMLHope] Just wanted to check in with folks I remember

['Icandoallttc' via CMLHope]

Hi all and yes we each have other health issues but fighting our blood cancers 
us a battle we all share.  I'm glad you are winning your battle. Fight on 
warrior. 

My Motto: Faith and Pills❤️
With Jeanie 18,s 
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Feb 3, 2016, at 11:41 AM, 'Susan Zimmerman' via CMLHope 
>  wrote:
> 
> Hello Peg,
> So glad to hear from you!  We are tough, us CML bunch.  We can take it if you 
> want to share with us the additional battles that have gone along with your 
> CML.   We are here to encourage!  You don't need to suffer alone, (altho I'm 
> hoping you have a good family, etc.)  Your battle could have involved fear, 
> as most people would let it in.  But just to remind, fear is False Evidence 
> Appearing Real, put there by the enemy.  Can you think of one thing that is 
> good about fear?  Same goes for worry.  No, they are only destructive.  Many 
> of us have come to the place where we know our bodies are only one third of 
> our whole being, and probably the least important of the three. (body, soul 
> and spirit).  So we try to let the other two rule our thinking, our outward 
> actions, and so on.  I know because of your faith you walk by faith, not by 
> sight!
> 
> I just thought of a good joke that came from facebook.  A big picture of a 
> huge grisly bear roaring.  The caption read, "Fear NOTHING!  Except a grisly 
> bear, because they will kill you."
> 
> Anyway, so glad your reports are getting better all the time. I hope you 
> enjoy your days and come back to share a word with us often!  We have missed 
> you!
> 
> 18's and blessings,
> Susan F. Zimmerman
> "Look among the nations and watch; be utterly astounded!  For I will work a 
> work in your days which you would not believe, though it were told you."  
> Hab. 1:5
> 
> 
> -Original Message-
> From: bkbarney via CMLHope 
> To: cmlhope 
> Sent: Tue, Feb 2, 2016 3:36 pm
> Subject: Re: [CMLHope] Just wanted to check in with folks I remember
> 
> Thanks for the update Peg..I am glad that things sound a bit more stable 
> for you...I do understand about not wanting to share with others if your road 
> is hard so as to not scare us, ..but truly, each of us is unique, and our 
> bodies respond very differently to treatments..so, please don't worry. 
> Getting good support is also key to quality of life, as it's a lot less 
> lonely...and together we can persevere... I am so sorry you have had to go 
> through all that you didI hope and pray that it somehow gets easier for 
> you...wow...2 years at zero is marvelous, but the price you have 
> paidI don't have words for that..except you are so resilient, so 
> amazingtake good care and know that you are cared for and loved here...
> 
> 18's, love and hugs,
> Beth
> 
> 
> -Original Message-
> From: Myvety2k via CMLHope 
> To: cmlhope 
> Sent: Tue, Feb 2, 2016 2:24 pm
> Subject: Re: [CMLHope] Just wanted to check in with folks I remember
> 
> Peg, that was my Aunt's name.  Anyway, don't be a stranger.  All of us that 
> have CML are in the same boat but taking different drugs.  I've been on 
> Gleevec 16 years 1 month, yes their are side effects but done that I can't 
> handle.  Cramps are the worse but I'm still here driving my wife crazy and 
> she love's every second of it :)
>  
> greenie
> club member #48
>  
> In a message dated 2/2/2016 1:55:33 P.M. Eastern Standard Time, 
> peg@live.com writes:
> Hi all,
> Thought I would check in today...it has been a while.  I see lots of new 
> names, but still a few that I remember.  I am now two years at zero 
> detectable on only 100mg of Tasigna daily...1/4th of the recommended dosage.  
> It got a bit rocky for a while, not from the CML, but along that course they 
> diagnosed me with five other, assume-ably unrelated, cancers including skin, 
> gastric, thyroid and lungs!  While I never lost my hope, I didn't wanted to 
> dim anyone else's hope by sharing news from my scary corner. However, as of 
> last month, all cancers are regressing, some we know for certain are also due 
> to Tasigna, and well, the others they are not sure why, so I choose to 
> believe it is also because of the Tasigna...and faith!  I am battling some 
> malnutrition issues that were from a severe reaction I had to Gleevec when I 
> was first diagnosed six years ago, but now knowing what those are we are 
> slowly making improvement towards gaining back a quality of life.  You can 
> never underestimate the value of quality of life!  I hope you are all finding 
> your own quality, never give up on that.  You are never far from my thoughts 
> and prayers!  
> 
> Six years and still here! 
> Fight on!!!
> peg
> -- 
> -- 
> [CMLHope]
> A support 

Re: [CMLHope] Am I strong? Are we all strong? Read on...

['Icandoallttc' via CMLHope]

That was great Marty.  I'm a great Believer in that. I know from personal 
experience that this is true.  
When I was young I went off to play with friends. My mom decided to send my 
brother who was 2 years older than to go and walk me home. 
On the way to get me he stopped at a store to asked if they had any quick jobs 
that he could do. They told him no so he started out on the walk to get me. He 
hadn't walked very far when a speeding car came up behind him. They honked 
their horn but instead of it warning him it startled him and he jumped in front 
of the car.  He was killed instantly.  He was my best friend and I la lost a 
lot that day.  If he hadn't stopped at the store he would never have been in 
the spot that killed him.  I take comfort in knowing that I will see him in 
heaven. 
❤️

My Motto: Faith and Pills❤️
With Jeanie 18,s 
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Feb 1, 2016, at 5:53 PM, Marty Gartenberg <wa2...@gmail.com> wrote:
> 
> Hi Everyone,
> 
> I have a question for everyone. Do you know where GOD wants us all to be? I 
> am sending you an attachment and it has to due with a personal experience 
> that I had with a very close friend of mine, and how he was saved when the 
> world trade center went down. We are all here for a reason.
> 
> 18's
> 
> Marty
> 
>> On Wed, Jan 20, 2016 at 11:31 PM, Richard H <rbhuffm...@gmail.com> wrote:
>> No I have not heard of this.  If this is true then I just collected another 
>> odd duck in my collection.  I still have my appendix. 
>> 
>>> On Wednesday, January 20, 2016 at 12:46:52 PM UTC-6, Icandoallttc wrote:
>>> Yes I had the rash and boils and ect.  Then I was put in Tasigna.  It was 
>>> awful for me.  Sprycel was the best as far as side effects. 
>>> I just saw a show that your appendix was your immune systems fighter and if 
>>> you didn't have one you could get leukemia and ect.  My appendix was taken 
>>> out when I had my gall bladder removed.  Anyone else heard this!!?
>>> 
>>> 
>>> My Motto: Faith and Pills❤️
>>> With Jeanie 18,s 
>>> Dx 1/2004. CML Leukemia
>>> Started Gleevec 2/2004
>>> Started Tasigna  9/2009
>>> Started Sprycel 11/2009
>>> Started Ponatinib January 2015
>>> Dr Balducci Moffitt Cancer Center
>>> 
>>>> On Jan 20, 2016, at 1:18 PM, perk <perku...@msn.com> wrote:
>>>> 
>>>> When I was first diagnosed, I was put on Gleevec and I broke out in a 
>>>> severe rash, as well as many other uncomfortable side effects. I was then 
>>>> put on Sprycel and while it has some of the same side effects, it is 
>>>> manageable and tolerable. I have lived with it for 7 years. Now there are 
>>>> other options. Find one that works for you and have a good life!
>>>> 
>>>> JD in TX 
>>>> 
>>>>> On Saturday, January 16, 2016 at 12:27:27 PM UTC-6, candles wrote:
>>>>> Today is my 1 yr anniversary of being diagnosed with CML, I'm here but 
>>>>> not happily.  So many side effects. Makes you wonder if it's worth it
>>>>> 
>>>>> Sent from my iPhone
>>>>> 
>>>>>> On Jan 16, 2016, at 12:23 AM, Pete Pabon <nyc...@hotmail.com> wrote:
>>>>>> 
>>>>>> Diagnosed 1999
>>>>>> Gleevec 2000
>>>>>> 15 years still no phillies found
>>>>>> 
>>>>>> 
>>>>>> Date: Fri, 15 Jan 2016 10:18:43 -0500
>>>>>> Subject: Re: [CMLHope] Am I strong? Are we all strong? Read on...
>>>>>> From: wa2...@gmail.com
>>>>>> To: cml...@googlegroups.com
>>>>>> 
>>>>>> Well now I got a much refreshing title. Being that everyone is a leader 
>>>>>> of this group so does it go to help all of us together.
>>>>>> 
>>>>>> You know that it's been so long that I forgot about Rob. I do hope to 
>>>>>> hear from him. I also had no idea about his mother having leukemia and I 
>>>>>> hope that she is doing well. 
>>>>>> 
>>>>>> So many new things have happened since we were members and as I remember 
>>>>>> this group was in fact a yahoo group but I just can't put my finger if 
>>>>>> it was for sure. Some time has passed and my memory has not been my 
>>>>>> greatest asset so I would really like to 

Re: [CMLHope] blood vessels

['Icandoallttc' via CMLHope]

Thanks Marty.  
Pills and faith is my motto. 
Hope you are good.   See my 18 in my signature.  


My Motto: Faith and Pills❤️
With Jeanie 18,s 
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Jan 24, 2016, at 7:55 PM, Marty Gartenberg <wa2...@gmail.com> wrote:
> 
> Psalms, and exactly what they mean.
> 
> Jeanie, I have already brought this up but I am not sure if you ever received 
> it? Also I am not exactly if it true but in spite of it I would l would like 
> to believe it is so I actually never did nor do I have any desire to do it 
> because this means a lot to me.
> 
> It is called The Center Of The bible. If you look the number 18 appears 
> either at the end or the beginning but especially in the center of the rest 
> of those numbers, and to me that represents life.  
> 
> Now I have seen you using it and I am talking about the 18's at the end of my 
> e-mails. Well this is where I first got it from. 
> 
> Just sit back and on some of these presentations they will each have to be 
> clicked to advance them and on others they will just run through. If one just 
> jams just push the button again and simply let run through by itself but be 
> sure to see 118:8 (18 in the middle). Be sure to turn on the sound
> 
> http://www.metacafe.com/watch/4959941/the_center_of_the_bible/ 
> 
> 18's
> 
> Marty
> 
> 
> 
>> On Sun, Jan 24, 2016 at 1:46 PM, 'Icandoallttc' via CMLHope 
>> <cmlhope@googlegroups.com> wrote:
>> Thanks Marty for the blessing.  Back at you!!! I feel so blessed that I have 
>> been able to make it through 11 years of this and now going into my 12th 
>> year I am still facing many health problems but fighting every day with 
>> faith and pills. 
>> I remember when I was hooked up to the blood cleansing machine many years 
>> ago that I said psalms 23 and it helped me a lot and I have read Job which 
>> will uplift you along with many of the psalms. 
>> I, like you, am waiting for a cure and hope our treatments will help people 
>> in the future.  
>> So thanks for all your uplifts and keep them coming.  
>> ❤️❤️❤️❤️
>> 
>> My Motto: Faith and Pills❤️
>> With Jeanie 18,s 
>> Dx 1/2004. CML Leukemia
>> Started Gleevec 2/2004
>> Started Tasigna  9/2009
>> Started Sprycel 11/2009
>> Started Ponatinib January 2015
>> Dr Balducci Moffitt Cancer Center
>> 
>>> On Jan 22, 2016, at 11:06 PM, Marty Gartenberg <wa2...@gmail.com> wrote:
>>> 
>>> Hey Greenie,
>>> 
>>> So I am a funny man, hey you should see me when I'm really feeling good. 
>>> 
>>> And by the way BLESS you as well. In fact as long as I am handing out any 
>>> blessings, bless each and everyone of you. That is what life is all about.
>>> 
>>> 18's
>>> 
>>> Marty
>>> 
>>>> On Thu, Jan 21, 2016 at 11:25 PM, Myvety2k via CMLHope 
>>>> <cmlhope@googlegroups.com> wrote:
>>>> Marty, you are a funny man, bless you.  You made my day.
>>>>  
>>>> greenie
>>>>  
>>>> In a message dated 1/21/2016 10:18:39 P.M. Eastern Standard Time, 
>>>> wa2...@gmail.com writes:
>>>> Greenie,
>>>> 
>>>> Do you know the difference between the south eastern Florida Q-tip and the 
>>>> south western Florida Q-tip?
>>>> 
>>>> NOTHING!
>>>> 
>>>> 18's,
>>>> 
>>>> Marty 
>>>> 
>>>>> On Thu, Jan 21, 2016 at 6:06 PM, Myvety2k via CMLHope 
>>>>> <cmlhope@googlegroups.com> wrote:
>>>>> Well, I'm glad to told me because their everywhere.  My next door 
>>>>> neighbor is 99 years old and drives a white Mercury Maruis and she's one. 
>>>>>  Beware when she leaves the house.
>>>>>  
>>>>> greenie
>>>>>  
>>>>> In a message dated 1/19/2016 9:05:50 P.M. Eastern Standard Time, 
>>>>> wa2...@gmail.com writes:
>>>>> So, you never heard about a Q tip. Well they are all around you. All you 
>>>>> need to do is to look closely at the car directly in front of you and for 
>>>>> some strange reason with out any warning they all of a sudden stop right 
>>>>> in the middle of the road directly behind you and look as they are having 
>>>>> some sort a verbal

Re: [CMLHope] blood vessels

['Icandoallttc' via CMLHope]

Thanks Marty for the blessing.  Back at you!!! I feel so blessed that I have 
been able to make it through 11 years of this and now going into my 12th year I 
am still facing many health problems but fighting every day with faith and 
pills. 
I remember when I was hooked up to the blood cleansing machine many years ago 
that I said psalms 23 and it helped me a lot and I have read Job which will 
uplift you along with many of the psalms. 
I, like you, am waiting for a cure and hope our treatments will help people in 
the future.  
So thanks for all your uplifts and keep them coming.  
❤️❤️❤️❤️

My Motto: Faith and Pills❤️
With Jeanie 18,s 
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Jan 22, 2016, at 11:06 PM, Marty Gartenberg  wrote:
> 
> Hey Greenie,
> 
> So I am a funny man, hey you should see me when I'm really feeling good. 
> 
> And by the way BLESS you as well. In fact as long as I am handing out any 
> blessings, bless each and everyone of you. That is what life is all about.
> 
> 18's
> 
> Marty
> 
>> On Thu, Jan 21, 2016 at 11:25 PM, Myvety2k via CMLHope 
>>  wrote:
>> Marty, you are a funny man, bless you.  You made my day.
>>  
>> greenie
>>  
>> In a message dated 1/21/2016 10:18:39 P.M. Eastern Standard Time, 
>> wa2...@gmail.com writes:
>> Greenie,
>> 
>> Do you know the difference between the south eastern Florida Q-tip and the 
>> south western Florida Q-tip?
>> 
>> NOTHING!
>> 
>> 18's,
>> 
>> Marty 
>> 
>>> On Thu, Jan 21, 2016 at 6:06 PM, Myvety2k via CMLHope 
>>>  wrote:
>>> Well, I'm glad to told me because their everywhere.   My next door 
>>> neighbor is 99 years old and drives a white Mercury Maruis and she's one.  
>>> Beware when she leaves the house.
>>>  
>>> greenie
>>>  
>>> In a message dated 1/19/2016 9:05:50 P.M. Eastern Standard Time, 
>>> wa2...@gmail.com writes:
>>> So, you never heard about a Q tip. Well they are all around you. All you 
>>> need to do is to look closely at the car directly in front of you and for 
>>> some strange reason with out any warning they all of a sudden stop right in 
>>> the middle of the road directly behind you and look as they are having some 
>>> sort a verbal conflict by themselves, that is if they don't fall asleep.
>>> 
>>> Now the key to understanding them is in fact the driver is much shorter 
>>> then the seat he is sitting in, so you can never actually see his head but 
>>> the Q-tip white hair above his head. This is a sure sign about his safe 
>>> driving because if he is stopped in the middle of the road motionless he 
>>> cant crash into you, but that's not to say you can crash into him.
>>> 
>>> Come on you, I am sure that you must have seen them a million times down 
>>> there in southwest Fl. They are also in southeast FL. By the way they also 
>>> manage to fall asleep whenever they are around and about... Scary...
>>> 
>>> Now your well versed in what a Q-tip Is. 
>>> 
>>> 18's,
>>> 
>>> Marty
>>> 
>>> 
>>> 
>>> 
>>> 
>>> 
>>> 
>>> 
>>> 
>>> 
>>> 
>>> 
>>> 
>>> 
>>> 
>>> 
>>> 
>>> 
>>> 
>>> 
>>> 
>>> 
>>> 
>>> qt 
>>> 
 On Mon, Jan 18, 2016 at 10:05 PM, Myvety2k via CMLHope 
  wrote:
 Marty, O. K. you got me what are Q-tips?  I've only lived in South Fort 
 Myers for 6 years.  Never heard about them.
  
 greenie
  
 In a message dated 1/18/2016 6:22:18 P.M. Eastern Standard Time, 
 wa2...@gmail.com writes:
 Hmm Southwest Florida, I sure hope that you don't have and "Q-tips" there 
 just like we have them in southeast Florida. If you need an explanation of 
 what a Q-tip is I will explain it to you.
 
 You better take 18's seriously.
 
 Marty
 
 
> On Sat, Jan 16, 2016 at 8:14 AM, Ana  wrote:
> Do any of you have problem with legs blood vessels because of Gleevec?
>  
> From: Myvety2k via CMLHope
> Sent: Saturday, January 16, 2016 1:39 PM
> To: cmlhope@googlegroups.com 
> Subject: Re: [CMLHope] Am I strong? Are we all strong? Read on...
>  
> Richard H.   I agree, well said.  I started Gleevec the first week in 
> Janurary 2000 16 years ago and I'm still pumping blood.  Of course the 
> way these people drive here in Southwest Florida it's like driving in the 
> Indy 500 with blindfolds on.
>  
> greenie
> In a message dated 1/16/2016 12:47:03 A.M. Eastern Standard Time, 
> rbhuffm...@gmail.com writes:
> Marti it is good to hear your (voice) and see you here.  I agree with you 
> and Jeanie.  I'll start my 14th year the first of March with this 
> wonderful group of loving and caring friends.  This history we give can 
> only be given thru leadership of having been there fighting the fight.  
> But

Re: [CMLHope] Am I strong? Are we all strong? Read on...

['Icandoallttc' via CMLHope]

My doctor early on told me he had a patient on Gleevec that had his bones 
aching so bad he couldn't stand it.  

My Motto: Faith and Pills❤️
With Jeanie 18,s 
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Jan 20, 2016, at 1:18 PM, perk <perkuss...@msn.com> wrote:
> 
> When I was first diagnosed, I was put on Gleevec and I broke out in a severe 
> rash, as well as many other uncomfortable side effects. I was then put on 
> Sprycel and while it has some of the same side effects, it is manageable and 
> tolerable. I have lived with it for 7 years. Now there are other options. 
> Find one that works for you and have a good life!
> 
> JD in TX 
> 
>> On Saturday, January 16, 2016 at 12:27:27 PM UTC-6, candles wrote:
>> Today is my 1 yr anniversary of being diagnosed with CML, I'm here but not 
>> happily.  So many side effects. Makes you wonder if it's worth it
>> 
>> Sent from my iPhone
>> 
>>> On Jan 16, 2016, at 12:23 AM, Pete Pabon <nyc...@hotmail.com> wrote:
>>> 
>>> Diagnosed 1999
>>> Gleevec 2000
>>> 15 years still no phillies found
>>> 
>>> 
>>> Date: Fri, 15 Jan 2016 10:18:43 -0500
>>> Subject: Re: [CMLHope] Am I strong? Are we all strong? Read on...
>>> From: wa2...@gmail.com
>>> To: cml...@googlegroups.com
>>> 
>>> Well now I got a much refreshing title. Being that everyone is a leader of 
>>> this group so does it go to help all of us together.
>>> 
>>> You know that it's been so long that I forgot about Rob. I do hope to hear 
>>> from him. I also had no idea about his mother having leukemia and I hope 
>>> that she is doing well. 
>>> 
>>> So many new things have happened since we were members and as I remember 
>>> this group was in fact a yahoo group but I just can't put my finger if it 
>>> was for sure. Some time has passed and my memory has not been my greatest 
>>> asset so I would really like to hear from Rob.
>>> 
>>> Just think look at some of the people that were still around then (like 
>>> yourself) that are still around now. Hey what ever happened to CML will be 
>>> only be around for 5 years until the "Lukie Dragon" will come and get you.  
>>>   
>>> 
>>> Do you remember that saying a very long time ago? Well that for sure has 
>>> has changed with all of these advancements using these TKI's and what is 
>>> coming down the pipe next.
>>> 
>>> I'm telling you it will be that, no matter what you are and what you 
>>> believe in there will come a time near to now that this "Dragon" will meet 
>>> it's demise.  
>>> 
>>> You mark my words.
>>> 
>>> 18's,
>>> 
>>> Marty
>>> 
>>> On Fri, Jan 15, 2016 at 7:02 AM, 'Icandoallttc' via CMLHope 
>>> <cml...@googlegroups.com> wrote:
>>> Hi Marty and good to hear from you.  We were wondering what happened.  
>>> I believe the founder and narrator of this group is Rob.  His mother had 
>>> leukemia.  Are you there Rob??? 
>>> Most of us have been here a long time.  I believe the group was once a 
>>> yahoo group.  
>>> We are all warriors and help each other when we can. 
>>> This makes my 12 th year and I joined the group early on.  
>>> And yes we are all leaders in our own way and pioneers with the tkis so 
>>> that've can give our knowledge to the new warriors. 
>>> I fight with faith and pills and I am a Christian. 
>>> Much love.  
>>> ️
>>> 
>>> My Motto: Faith and Pills
>>> Jeanie 18,s 
>>> Dx 1/2004. CML Leukemia
>>> Started Gleevec 2/2004
>>> Started Tasigna  9/2009
>>> Started Sprycel 11/2009
>>> Started Ponatinib January 2015
>>> Dr Balducci Moffitt Cancer Center
>>> 
>>> On Jan 13, 2016, at 12:38 AM, Marty Gartenberg <wa2...@gmail.com> wrote:
>>> 
>>> For some reason my message did not come out so I am trying it once more, I 
>>> do hope it does come through
>>> 
>>> This is directed to Sandi and everyone else.
>>> 
>>> Dearest Sandi, and I really mean that, but for a very special reason. It is 
>>> not the words that I wright but it is my meaning. You and everyone else 
>>> here are only here because all of us are meant to be here. Am I strong well 
>>> maybe I am or I probably wouldn't be here right now. 
>&

Re: [CMLHope] Am I strong? Are we all strong? Read on...

['Icandoallttc' via CMLHope]

Yes I had the rash and boils and ect.  Then I was put in Tasigna.  It was awful 
for me.  Sprycel was the best as far as side effects. 
I just saw a show that your appendix was your immune systems fighter and if you 
didn't have one you could get leukemia and ect.  My appendix was taken out when 
I had my gall bladder removed.  Anyone else heard this!!?


My Motto: Faith and Pills❤️
With Jeanie 18,s 
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Jan 20, 2016, at 1:18 PM, perk <perkuss...@msn.com> wrote:
> 
> When I was first diagnosed, I was put on Gleevec and I broke out in a severe 
> rash, as well as many other uncomfortable side effects. I was then put on 
> Sprycel and while it has some of the same side effects, it is manageable and 
> tolerable. I have lived with it for 7 years. Now there are other options. 
> Find one that works for you and have a good life!
> 
> JD in TX 
> 
>> On Saturday, January 16, 2016 at 12:27:27 PM UTC-6, candles wrote:
>> Today is my 1 yr anniversary of being diagnosed with CML, I'm here but not 
>> happily.  So many side effects. Makes you wonder if it's worth it
>> 
>> Sent from my iPhone
>> 
>>> On Jan 16, 2016, at 12:23 AM, Pete Pabon <nyc...@hotmail.com> wrote:
>>> 
>>> Diagnosed 1999
>>> Gleevec 2000
>>> 15 years still no phillies found
>>> 
>>> 
>>> Date: Fri, 15 Jan 2016 10:18:43 -0500
>>> Subject: Re: [CMLHope] Am I strong? Are we all strong? Read on...
>>> From: wa2...@gmail.com
>>> To: cml...@googlegroups.com
>>> 
>>> Well now I got a much refreshing title. Being that everyone is a leader of 
>>> this group so does it go to help all of us together.
>>> 
>>> You know that it's been so long that I forgot about Rob. I do hope to hear 
>>> from him. I also had no idea about his mother having leukemia and I hope 
>>> that she is doing well. 
>>> 
>>> So many new things have happened since we were members and as I remember 
>>> this group was in fact a yahoo group but I just can't put my finger if it 
>>> was for sure. Some time has passed and my memory has not been my greatest 
>>> asset so I would really like to hear from Rob.
>>> 
>>> Just think look at some of the people that were still around then (like 
>>> yourself) that are still around now. Hey what ever happened to CML will be 
>>> only be around for 5 years until the "Lukie Dragon" will come and get you.  
>>>   
>>> 
>>> Do you remember that saying a very long time ago? Well that for sure has 
>>> has changed with all of these advancements using these TKI's and what is 
>>> coming down the pipe next.
>>> 
>>> I'm telling you it will be that, no matter what you are and what you 
>>> believe in there will come a time near to now that this "Dragon" will meet 
>>> it's demise.  
>>> 
>>> You mark my words.
>>> 
>>> 18's,
>>> 
>>> Marty
>>> 
>>> On Fri, Jan 15, 2016 at 7:02 AM, 'Icandoallttc' via CMLHope 
>>> <cml...@googlegroups.com> wrote:
>>> Hi Marty and good to hear from you.  We were wondering what happened.  
>>> I believe the founder and narrator of this group is Rob.  His mother had 
>>> leukemia.  Are you there Rob??? 
>>> Most of us have been here a long time.  I believe the group was once a 
>>> yahoo group.  
>>> We are all warriors and help each other when we can. 
>>> This makes my 12 th year and I joined the group early on.  
>>> And yes we are all leaders in our own way and pioneers with the tkis so 
>>> that've can give our knowledge to the new warriors. 
>>> I fight with faith and pills and I am a Christian. 
>>> Much love.  
>>> ️
>>> 
>>> My Motto: Faith and Pills
>>> Jeanie 18,s 
>>> Dx 1/2004. CML Leukemia
>>> Started Gleevec 2/2004
>>> Started Tasigna  9/2009
>>> Started Sprycel 11/2009
>>> Started Ponatinib January 2015
>>> Dr Balducci Moffitt Cancer Center
>>> 
>>> On Jan 13, 2016, at 12:38 AM, Marty Gartenberg <wa2...@gmail.com> wrote:
>>> 
>>> For some reason my message did not come out so I am trying it once more, I 
>>> do hope it does come through
>>> 
>>> This is directed to Sandi and everyone else.
>>> 
>>> Dearest Sandi, and I really mean that, but for a very special reason. It is 
>&

Re: [CMLHope] rob's message long ago

['Icandoallttc' via CMLHope]

Yes it was his mother that had leukemia.  

My Motto: Faith and Pills❤️
With Jeanie 18,s 
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Jan 19, 2016, at 9:41 AM, Icandoallttc <icandoall...@aol.com> wrote:
> 
> That was an old message.  See subject.  Sorry.  
> 
> My Motto: Faith and Pills❤️
> With Jeanie 18,s 
> Dx 1/2004. CML Leukemia
> Started Gleevec 2/2004
> Started Tasigna  9/2009
> Started Sprycel 11/2009
> Started Ponatinib January 2015
> Dr Balducci Moffitt Cancer Center
> 
>> On Jan 16, 2016, at 8:50 AM, ICANDOALLTTC via CMLHope 
>> <cmlhope@googlegroups.com> wrote:
>> 
>>  
>> 
>> 
>> I wanted to let all of you in the CML group know that my father Robert Wood
>> Neill has passed away. Many of you who are long term members know that the
>> CML group was started many years in the days long before Gleevec when my
>> mother Laquita was diagnosed with CML.  
>> In a message dated 1/16/2016 7:39:14 A.M. Eastern Standard Time, 
>> cmlhope@googlegroups.com writes:
>> Richard H.   I agree, well said.  I started Gleevec the first week in 
>> Janurary 2000 16 years ago and I'm still pumping blood.  Of course the way 
>> these people drive here in Southwest Florida it's like driving in the Indy 
>> 500 with blindfolds on.
>>  
>> greenie
>> In a message dated 1/16/2016 12:47:03 A.M. Eastern Standard Time, 
>> rbhuffm...@gmail.com writes:
>> Marti it is good to hear your (voice) and see you here.  I agree with you 
>> and Jeanie.  I'll start my 14th year the first of March with this wonderful 
>> group of loving and caring friends.  This history we give can only be given 
>> thru leadership of having been there fighting the fight.  But leadership 
>> always needs a significant special leader (General, Admiral) too narrow our 
>> path so that we can win the current battle.  Thanks for keeping us looking 
>> up to the sunrise of a new day and helping wash away all the doubt, fear, 
>> and other dark thoughts that detract us from fulfilling this life we have on 
>> Planet Earth.
>> 
>> 18's
>> 
>> Richard H.  
>> 
>>> On Friday, January 15, 2016 at 6:03:03 AM UTC-6, Icandoallttc wrote:
>>> Hi Marty and good to hear from you.  We were wondering what happened.  
>>> I believe the founder and narrator of this group is Rob.  His mother had 
>>> leukemia.  Are you there Rob??? 
>>> Most of us have been here a long time.  I believe the group was once a 
>>> yahoo group.  
>>> We are all warriors and help each other when we can. 
>>> This makes my 12 th year and I joined the group early on.  
>>> And yes we are all leaders in our own way and pioneers with the tkis so 
>>> that've can give our knowledge to the new warriors. 
>>> I fight with faith and pills and I am a Christian. 
>>> Much love.  
>>> ❤️
>>> 
>>> My Motto: Faith and Pills
>>> Jeanie 18,s 
>>> Dx 1/2004. CML Leukemia
>>> Started Gleevec 2/2004
>>> Started Tasigna  9/2009
>>> Started Sprycel 11/2009
>>> Started Ponatinib January 2015
>>> Dr Balducci Moffitt Cancer Center
>>> 
>>>> On Jan 13, 2016, at 12:38 AM, Marty Gartenberg <wa2...@gmail.com> wrote:
>>>> 
>>>> For some reason my message did not come out so I am trying it once more, I 
>>>> do hope it does come through
>>>> 
>>>> This is directed to Sandi and everyone else.
>>>> 
>>>> Dearest Sandi, and I really mean that, but for a very special reason. It 
>>>> is not the words that I wright but it is my meaning. You and everyone else 
>>>> here are only here because all of us are meant to be here. Am I strong 
>>>> well maybe I am or I probably wouldn't be here right now.
>>>> 
>>>> 
>>>> 
>>>> My question to you and everyone else that may be reading this are you also 
>>>> strong. You know what? You have to be because you are battling an awful 
>>>> disease, but my friends just like me am I still here, and are you. You bet 
>>>> we are.
>>>> 
>>>> 
>>>> 
>>>> So no matter how strong I may be and no matter how strong any of you may 
>>>> be, guess what? We are still here together and until "uncle GOD" 
>>>> determinants otherwise this is where we stay.
>>>> 
>>>> 
>>>> 
&

Re: [CMLHope] To Kathy

['Icandoallttc' via CMLHope]

Thanks Marty and thanks for all the uplifts.   
During my fight I have seen several of my gg grandchildren come into this world 
and have been on many trips with my children.
I have celebrated 11 birthdays with my children.   Is it worth it??? Yes it is. 
Kathy I am not saying it's going to be easy!! Gleevec through everything it had 
at me and I fought on.  Take your Gleevec with a large mild meal.  I liked to 
take it with my breakfast as that is a mild meal.  Try to stay away from 
spices.
Gleevec never put me in remission and after 5 years quit on me.  However, there 
are a lot of people in this list that are still on Gleevec and doing good.  We 
are all unique and so have to listen to our bodies and never give up!!! 
Good luck.

My Motto: Faith and Pills❤️
With Jeanie 18,s 
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Jan 18, 2016, at 6:02 PM, Marty Gartenberg <wa2...@gmail.com> wrote:
> 
> Hi Jeanie,
> 
> I just felt it appropriate to make only one comment to something that you said
> 
> First let me read part of your comment
> 
> "This is my 12 th year fighting cml and yes it was worth it."
> 
> Yes Jeanie it was worth every second of it.
> 
> You know me and that is probably why I am still alive. EVERY SECOND OF IT.
> 
> A word to the "newbies" If you ever become depressed or wonder why this is 
> happening to any of you then I want you to thing about 13 of 14 years into 
> the past when there was nothing. Now just look at all of you. You have your 
> life back. Remember worth every second of it.
> 
> And Jeanie You shine. Oh yes you do.
> 
> By the way, if any of you are interested gmail has it own web conferencing 
> program built in to it. As long as you have a gmail account and a webcam you 
> can get on and have a video conference with up to I think 10 other people.
> 
> If you look on way the bottom of your screen you will see a ittle man then 
> right next to it a " in a little black circle and next to that a symbol of a 
> telephone receiver.
> 
> 18's,
> 
> Marty
> 
> 
> 
>> On Sun, Jan 17, 2016 at 7:42 AM, 'Icandoallttc' via CMLHope 
>> <cmlhope@googlegroups.com> wrote:
>> 
>> Hi Kathy
>> This is my 12 th year fighting cml and yes it was worth it.  I know what you 
>> are going through as I remember my first year in Gleevec.   We have many 
>> more choices now so if it gets too bad talk to your dr about changing tkis.  
>>  
>> Make sure you are going to a specialty cml onc as I made the mistake in the 
>> beginning of going to an onc that didn't know what he was doing. Stay strong 
>> and stay connected.  
>> ❤️
>> My Motto: Faith and Pills❤️
>> With Jeanie 18,s 
>> Dx 1/2004. CML Leukemia
>> Started Gleevec 2/2004
>> Started Tasigna  9/2009
>> Started Sprycel 11/2009
>> Started Ponatinib January 2015
>> Dr Balducci Moffitt Cancer Center
>> 
>>> On Jan 16, 2016, at 1:27 PM, kathy walls <cand...@originalsbykate.com> 
>>> wrote:
>>> 
>>> Today is my 1 yr anniversary of being diagnosed with CML, I'm here but not 
>>> happily.  So many side effects. Makes you wonder if it's worth it
>>> 
>>> Sent from my iPhone
>>> 
>>>> On Jan 16, 2016, at 12:23 AM, Pete Pabon <nyc...@hotmail.com> wrote:
>>>> 
>>>> Diagnosed 1999
>>>> Gleevec 2000
>>>> 15 years still no phillies found
>>>> 
>>>> 
>>>> Date: Fri, 15 Jan 2016 10:18:43 -0500
>>>> Subject: Re: [CMLHope] Am I strong? Are we all strong? Read on...
>>>> From: wa2...@gmail.com
>>>> To: cmlhope@googlegroups.com
>>>> 
>>>> Well now I got a much refreshing title. Being that everyone is a leader of 
>>>> this group so does it go to help all of us together.
>>>> 
>>>> You know that it's been so long that I forgot about Rob. I do hope to hear 
>>>> from him. I also had no idea about his mother having leukemia and I hope 
>>>> that she is doing well. 
>>>> 
>>>> So many new things have happened since we were members and as I remember 
>>>> this group was in fact a yahoo group but I just can't put my finger if it 
>>>> was for sure. Some time has passed and my memory has not been my greatest 
>>>> asset so I would really like to hear from Rob.
>>>> 
>>>> Just think look at some of the people that were still around then (like 
>>>> yourself) that are still arou

Re: [CMLHope] rob's message long ago

['Icandoallttc' via CMLHope]

That was an old message.  See subject.  Sorry.  

My Motto: Faith and Pills❤️
With Jeanie 18,s 
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Jan 16, 2016, at 8:50 AM, ICANDOALLTTC via CMLHope 
> <cmlhope@googlegroups.com> wrote:
> 
>  
> 
> 
> I wanted to let all of you in the CML group know that my father Robert Wood
> Neill has passed away. Many of you who are long term members know that the
> CML group was started many years in the days long before Gleevec when my
> mother Laquita was diagnosed with CML.  
> In a message dated 1/16/2016 7:39:14 A.M. Eastern Standard Time, 
> cmlhope@googlegroups.com writes:
> Richard H.   I agree, well said.  I started Gleevec the first week in 
> Janurary 2000 16 years ago and I'm still pumping blood.  Of course the way 
> these people drive here in Southwest Florida it's like driving in the Indy 
> 500 with blindfolds on.
>  
> greenie
> In a message dated 1/16/2016 12:47:03 A.M. Eastern Standard Time, 
> rbhuffm...@gmail.com writes:
> Marti it is good to hear your (voice) and see you here.  I agree with you and 
> Jeanie.  I'll start my 14th year the first of March with this wonderful group 
> of loving and caring friends.  This history we give can only be given thru 
> leadership of having been there fighting the fight.  But leadership always 
> needs a significant special leader (General, Admiral) too narrow our path so 
> that we can win the current battle.  Thanks for keeping us looking up to the 
> sunrise of a new day and helping wash away all the doubt, fear, and other 
> dark thoughts that detract us from fulfilling this life we have on Planet 
> Earth.
> 
> 18's
> 
> Richard H.  
> 
>> On Friday, January 15, 2016 at 6:03:03 AM UTC-6, Icandoallttc wrote:
>> Hi Marty and good to hear from you.  We were wondering what happened.  
>> I believe the founder and narrator of this group is Rob.  His mother had 
>> leukemia.  Are you there Rob??? 
>> Most of us have been here a long time.  I believe the group was once a yahoo 
>> group.  
>> We are all warriors and help each other when we can. 
>> This makes my 12 th year and I joined the group early on.  
>> And yes we are all leaders in our own way and pioneers with the tkis so 
>> that've can give our knowledge to the new warriors. 
>> I fight with faith and pills and I am a Christian. 
>> Much love.  
>> ❤️
>> 
>> My Motto: Faith and Pills
>> Jeanie 18,s 
>> Dx 1/2004. CML Leukemia
>> Started Gleevec 2/2004
>> Started Tasigna  9/2009
>> Started Sprycel 11/2009
>> Started Ponatinib January 2015
>> Dr Balducci Moffitt Cancer Center
>> 
>>> On Jan 13, 2016, at 12:38 AM, Marty Gartenberg <wa2...@gmail.com> wrote:
>>> 
>>> For some reason my message did not come out so I am trying it once more, I 
>>> do hope it does come through
>>> 
>>> This is directed to Sandi and everyone else.
>>> 
>>> Dearest Sandi, and I really mean that, but for a very special reason.   
>>>It is not the words that I wright but it is my meaning. You and everyone 
>>> else here are only here because all of us are meant to be here. Am I strong 
>>> well maybe I am or I probably wouldn't be here right now.
>>> 
>>> 
>>> 
>>> My question to you and everyone else that may be reading this are you also 
>>> strong. You know what? You have to be because you are battling an awful 
>>> disease, but my friends just like me am I still here, and are you. You bet 
>>> we are.
>>> 
>>> 
>>> 
>>> So no matter how strong I may be and no matter how strong any of you may 
>>> be, guess what? We are still here together and until "uncle GOD" 
>>> determinants otherwise this is where we stay.
>>> 
>>> 
>>> 
>>> How many times have I been at deaths door? Now look at what you have. You 
>>> have life, just as I do and do you know why it's really very simple because 
>>> about a bit more then a decade ago some mortal man discovered a pill that 
>>> changed the course of your lives. You, all of you are living proof. 
>>> 
>>> 
>>> 
>>> So I am not what anyone thinks about me because your living proof just as I 
>>> am we are all strong in spite of what you think.
>>> 
>>> 
>>> 
>>> Am I a leader of this group perhaps I am, however  what about each and 
>>> everyone else. Please try to understand people that are

[CMLHope] To Kathy

['Icandoallttc' via CMLHope]

Hi Kathy
This is my 12 th year fighting cml and yes it was worth it.  I know what you 
are going through as I remember my first year in Gleevec.   We have many more 
choices now so if it gets too bad talk to your dr about changing tkis.   
Make sure you are going to a specialty cml onc as I made the mistake in the 
beginning of going to an onc that didn't know what he was doing. Stay strong 
and stay connected.  
❤️
My Motto: Faith and Pills❤️
With Jeanie 18,s 
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Jan 16, 2016, at 1:27 PM, kathy walls <cand...@originalsbykate.com> wrote:
> 
> Today is my 1 yr anniversary of being diagnosed with CML, I'm here but not 
> happily.  So many side effects. Makes you wonder if it's worth it
> 
> Sent from my iPhone
> 
>> On Jan 16, 2016, at 12:23 AM, Pete Pabon <nyc...@hotmail.com> wrote:
>> 
>> Diagnosed 1999
>> Gleevec 2000
>> 15 years still no phillies found
>> 
>> 
>> Date: Fri, 15 Jan 2016 10:18:43 -0500
>> Subject: Re: [CMLHope] Am I strong? Are we all strong? Read on...
>> From: wa2...@gmail.com
>> To: cmlhope@googlegroups.com
>> 
>> Well now I got a much refreshing title. Being that everyone is a leader of 
>> this group so does it go to help all of us together.
>> 
>> You know that it's been so long that I forgot about Rob. I do hope to hear 
>> from him. I also had no idea about his mother having leukemia and I hope 
>> that she is doing well. 
>> 
>> So many new things have happened since we were members and as I remember 
>> this group was in fact a yahoo group but I just can't put my finger if it 
>> was for sure. Some time has passed and my memory has not been my greatest 
>> asset so I would really like to hear from Rob.
>> 
>> Just think look at some of the people that were still around then (like 
>> yourself) that are still around now. Hey what ever happened to CML will be 
>> only be around for 5 years until the "Lukie Dragon" will come and get you.   
>>  
>> 
>> Do you remember that saying a very long time ago? Well that for sure has has 
>> changed with all of these advancements using these TKI's and what is coming 
>> down the pipe next.
>> 
>> I'm telling you it will be that, no matter what you are and what you believe 
>> in there will come a time near to now that this "Dragon" will meet it's 
>> demise.  
>> 
>> You mark my words.
>> 
>> 18's,
>> 
>> Marty
>> 
>> On Fri, Jan 15, 2016 at 7:02 AM, 'Icandoallttc' via CMLHope 
>> <cmlhope@googlegroups.com> wrote:
>> Hi Marty and good to hear from you.  We were wondering what happened.  
>> I believe the founder and narrator of this group is Rob.  His mother had 
>> leukemia.  Are you there Rob??? 
>> Most of us have been here a long time.  I believe the group was once a yahoo 
>> group.  
>> We are all warriors and help each other when we can. 
>> This makes my 12 th year and I joined the group early on.  
>> And yes we are all leaders in our own way and pioneers with the tkis so 
>> that've can give our knowledge to the new warriors. 
>> I fight with faith and pills and I am a Christian. 
>> Much love.  
>> ️
>> 
>> My Motto: Faith and Pills
>> Jeanie 18,s 
>> Dx 1/2004. CML Leukemia
>> Started Gleevec 2/2004
>> Started Tasigna  9/2009
>> Started Sprycel 11/2009
>> Started Ponatinib January 2015
>> Dr Balducci Moffitt Cancer Center
>> 
>> On Jan 13, 2016, at 12:38 AM, Marty Gartenberg <wa2...@gmail.com> wrote:
>> 
>> For some reason my message did not come out so I am trying it once more, I 
>> do hope it does come through
>> 
>> This is directed to Sandi and everyone else.
>> 
>> Dearest Sandi, and I really mean that, but for a very special reason. It is 
>> not the words that I wright but it is my meaning. You and everyone else here 
>> are only here because all of us are meant to be here. Am I strong well maybe 
>> I am or I probably wouldn't be here right now. 
>> 
>> 
>> My question to you and everyone else that may be reading this are you also 
>> strong. You know what? You have to be because you are battling an awful 
>> disease, but my friends just like me am I still here, and are you. You bet 
>> we are.
>> 
>> 
>> 
>> So no matter how strong I may be and no matter how strong any of you may be, 
>> guess what? We are still here together and until "uncle GOD" determin

[CMLHope] Fwd: hi rob can you put me back on the cmlhope mailing list? Thanks Jeanie

[ICANDOALLTTC via CMLHope]

Here is our Rob, the founder and leader of our Cml group.
 
  

 From: icandoall...@aol.com
To: roblibe...@gmail.com
Sent: 5/13/2014  6:03:03 P.M. Eastern Standard Time
Subj: Re: hi rob can you put me back on  the cmlhope mailing list? Thanks 
Jeanie


Thanks so much and thanks for this list.  Great job!
Blessings,
Jeanie<3
 
 
In a message dated 5/7/2014 9:29:12 P.M. Eastern Daylight Time,  
roblibe...@gmail.com writes:

I added you.


On Wed, May 7, 2014 at 4:20 PM, <_ICANDOALLTTC@aol.com_ 
(mailto:icandoall...@aol.com) > wrote:










-- 

Robert W. Neill, Jr.

Voice/Text  601-519-0075





-- 
-- 
[CMLHope]
A support group of http://cmlhope.com
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[CMLHope] rob's message long ago

[ICANDOALLTTC via CMLHope]

I wanted to let all of you in the CML group know that my father Robert Wood 
Neill has passed away. Many of you who are long term members know that the
 CML group was started many years in the days long before Gleevec when my
 mother Laquita was diagnosed with CML.  

 
In a message dated 1/16/2016 7:39:14 A.M. Eastern Standard Time,  
cmlhope@googlegroups.com writes:

Richard H.   I agree, well said.  I started  Gleevec the first week in 
Janurary 2000 16 years ago and I'm still pumping  blood.  Of course the way 
these people drive here in Southwest Florida  it's like driving in the Indy 500 
with blindfolds on.
 
greenie
 
In a message dated 1/16/2016 12:47:03 A.M. Eastern Standard Time,  
rbhuffm...@gmail.com writes:

Marti it is good to hear your (voice) and see you here.  I  agree with you 
and Jeanie.  I'll start my 14th year the first of March  with this wonderful 
group of loving and caring friends.  This history  we give can only be 
given thru leadership of having been there fighting the  fight.  But leadership 
always needs a significant special leader  (General, Admiral) too narrow our 
path so that we can win the current  battle.  Thanks for keeping us looking 
up to the sunrise of a new day  and helping wash away all the doubt, fear, 
and other dark thoughts that  detract us from fulfilling this life we have 
on Planet  Earth.

18's

Richard H.  

On Friday, January 15,  2016 at 6:03:03 AM UTC-6, Icandoallttc wrote:  
 
Hi Marty and good to hear from you.  We were wondering what  happened.  
I believe the founder and narrator of this group is Rob.  His  mother had 
leukemia.  Are you there Rob??? 
Most of us have been here a long time.  I believe the group was  once a 
yahoo group.  
We are all warriors and help each other when we can. 
This makes my 12 th year and I joined the group early on.  
And yes we are all leaders in our own way and pioneers with the tkis  so 
that've can give our knowledge to the new warriors. 
I fight with faith and pills and I am a Christian. 
Much love.  
❤️

My Motto: Faith and Pills  
Jeanie 18,s   
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center



On Jan 13, 2016, at 12:38 AM, Marty Gartenberg <_wa2...@gmail.com_ 
(javascript:) >  wrote:




 
For some reason my message did not come out so I am trying it once  more, I 
do hope it does come through


This is directed to  Sandi and everyone else.

Dearest Sandi, and I really mean that, but for a very special reason.  It 
is not the words that I wright but it is my meaning. You and everyone  else 
here are only here because all of us are meant to be here. Am I  strong well 
maybe I am or I probably wouldn't be here right now.  

My question to you and everyone else that may be reading this are you  also 
strong. You know what? You have to be because you are battling an  awful 
disease, but my friends just like me am I still here, and are you.  You bet we 
are.

So no matter how strong I may be and no matter how strong any of you  may 
be, guess what? We are still here together and until "uncle GOD"  
determinants otherwise this is where we stay. 

How many times have I been at deaths door? Now look at what you have.  You 
have life, just as I do and do you know why it's really very simple  because 
about a bit more then a decade ago some mortal man discovered a  pill that 
changed the course of your lives. You, all of you are living  proof. 

So I am not what anyone thinks about me because your living proof  just as 
I am we are all strong in spite of what you think. 

Am I a leader of this group perhaps I am, however  what about  each and 
everyone else. Please try to understand people that are in a  group are the 
power of that group. 

OK so lately I have a little more activity in my life health wise  then 
normal (whatever that may be) 

So please lets everyone stop calling me the leader of this group  because 
we all are some a little more some a little bit less but when we  all come 
together we are a force to recon with. 

Remember 18's Have you ever noticed that I have never left it out  before? 
Who knows maybe there is a reason. 18's is life, at least in my  book. 

Marty

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Re: [CMLHope] CML Group and Web Site

['Icandoallttc' via CMLHope]

Thanks Rob.  

My Motto: Faith and Pills❤️
With Jeanie 18,s 
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Jan 16, 2016, at 12:09 PM, Robert W Neill Jr  wrote:
> 
> Several were asking if I still manage the group. I still manage the
> group and the CMLHope web site. We recently updated the web site
> http://cmlhope.com to make it easier to use.
> 
> We have weekly, sometimes daily posts, on new articles about CML. In
> addition to the group on GoogleGroups, we also have a Facebook group
> which has about 500 members and we now have a Twitter account where
> articles are posted daily which reach people who are not members of
> the Google or Facebook groups.
> 
> Rob
> 
> -- 
> -- 
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Re: [CMLHope] Pancreatitis while on Bosutinib

['Icandoallttc' via CMLHope]

Also see if she is drinking enough water.  Usually when you start a tki they 
put you on allinpurinol for a while to clean out the dead cancer cells. I took 
it the first few months on my new ponatinib.  

My Motto: Faith and Pills
Jeanie 18,s 
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Jan 15, 2016, at 5:56 AM, Icandoallttc  wrote:
> 
> Hi and yes pancreatis is a side effect of tkis.   One of my side effects 
> after being on Tasigna was increased right side pain. I asked my onc about it 
> and he said if you had pancreatis you would be rolling on the floor with 
> pain.  He did an MRI and my pancreas was fine. Is she going to a good 
> specialist in cml?? 
> Good luck.  
> 
> My Motto: Faith and Pills
> Jeanie 18,s 
> Dx 1/2004. CML Leukemia
> Started Gleevec 2/2004
> Started Tasigna  9/2009
> Started Sprycel 11/2009
> Started Ponatinib January 2015
> Dr Balducci Moffitt Cancer Center
> 
>> On Jan 14, 2016, at 8:48 AM, Choi  wrote:
>> 
>> Hi, this is Choi.
>> 
>> One of my CML friends has been on Bosutinib for 6 months.
>> Recently her blood test shows the possibility of pancreatitis(I think it's 
>> elevation of lipase or amylase). 
>> Her doctor stops bosutinib for about 1 week to treat this symptoms and then 
>> is planning to resume bosutinib.
>> She is a little bit confused and doesn't see how can handle this situations 
>> because she was genearlly OK while on bosutinib.
>> Do you heard or know bosutinib and pancreatitis? 
>> -- 
>> -- 
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Re: [CMLHope] Pancreatitis while on Bosutinib

['Icandoallttc' via CMLHope]

Hi and yes pancreatis is a side effect of tkis.   One of my side effects after 
being on Tasigna was increased right side pain. I asked my onc about it and he 
said if you had pancreatis you would be rolling on the floor with pain.  He did 
an MRI and my pancreas was fine. Is she going to a good specialist in cml?? 
Good luck.  

My Motto: Faith and Pills
Jeanie 18,s 
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Jan 14, 2016, at 8:48 AM, Choi  wrote:
> 
> Hi, this is Choi.
> 
> One of my CML friends has been on Bosutinib for 6 months.
> Recently her blood test shows the possibility of pancreatitis(I think it's 
> elevation of lipase or amylase). 
> Her doctor stops bosutinib for about 1 week to treat this symptoms and then 
> is planning to resume bosutinib.
> She is a little bit confused and doesn't see how can handle this situations 
> because she was genearlly OK while on bosutinib.
> Do you heard or know bosutinib and pancreatitis? 
> -- 
> -- 
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> A support group of http://cmlhope.com
> -
>  
> You received this message because you are subscribed to the Google Groups 
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Re: [CMLHope] Am I strong? Are we all strong? Read on...

['Icandoallttc' via CMLHope]

Hi Marty and good to hear from you.  We were wondering what happened.  
I believe the founder and narrator of this group is Rob.  His mother had 
leukemia.  Are you there Rob??? 
Most of us have been here a long time.  I believe the group was once a yahoo 
group.  
We are all warriors and help each other when we can. 
This makes my 12 th year and I joined the group early on.  
And yes we are all leaders in our own way and pioneers with the tkis so that've 
can give our knowledge to the new warriors. 
I fight with faith and pills and I am a Christian. 
Much love.  
❤️

My Motto: Faith and Pills
Jeanie 18,s 
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Jan 13, 2016, at 12:38 AM, Marty Gartenberg  wrote:
> 
> For some reason my message did not come out so I am trying it once more, I do 
> hope it does come through
> 
> This is directed to Sandi and everyone else.
> 
> Dearest Sandi, and I really mean that, but for a very special reason. It is 
> not the words that I wright but it is my meaning. You and everyone else here 
> are only here because all of us are meant to be here. Am I strong well maybe 
> I am or I probably wouldn't be here right now.
> 
> 
> 
> My question to you and everyone else that may be reading this are you also 
> strong. You know what? You have to be because you are battling an awful 
> disease, but my friends just like me am I still here, and are you. You bet we 
> are.
> 
> 
> 
> So no matter how strong I may be and no matter how strong any of you may be, 
> guess what? We are still here together and until "uncle GOD" determinants 
> otherwise this is where we stay.
> 
> 
> 
> How many times have I been at deaths door? Now look at what you have. You 
> have life, just as I do and do you know why it's really very simple  because 
> about a bit more then a decade ago some mortal man discovered a pill that 
> changed the course of your lives. You, all of you are living proof. 
> 
> 
> 
> So I am not what anyone thinks about me because your living proof just as I 
> am we are all strong in spite of what you think.
> 
> 
> 
> Am I a leader of this group perhaps I am, however  what about each and 
> everyone else. Please try to understand people that are in a group are the 
> power of that group.
> 
> 
> 
> OK so lately I have a little more activity in my life health wise then normal 
> (whatever that may be) 
> 
> 
> 
> So please lets everyone stop calling me the leader of this group because we 
> all are some a little more some a little bit less but when we all come 
> together we are a force to recon with.
> 
> 
> 
> Remember 18's Have you ever noticed that I have never left it out before? Who 
> knows maybe there is a reason. 18's is life, at least in my book.
> 
> 
> 
> Marty
> -- 
> -- 
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> A support group of http://cmlhope.com
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Re: [CMLHope] Re: stroke

['Icandoallttc' via CMLHope]

Yes you are right Susan.  Think of each day as a gift.  
My BP goes up when I see a white coat but is has stayed a little high as of 
late.
I have had 3 ct scans and nothing showed up about my side.  I also had 
endoscopy with no results except red stomach.im so happy you are doing better. 
Thanks for being there for me and all. 
Still haven't heard from Marty. 


My Motto: Faith and Pills
Jeanie 18,s 
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Jan 5, 2016, at 11:40 AM, 'Susan Zimmerman' via CMLHope 
> <cmlhope@googlegroups.com> wrote:
> 
> Thanks Jeanie,
> I really do not worry because as you know, it's not productive and helps 
> NOTHING.  I also am thankful my bp has gone down to normal without 
> medication, as I really have tried to relieve all stress in my life.  Has 
> your bp gone down?  I sure hope so.  We can create our own stress by 
> worrying, or relax in the everyday joy of going through trials to make us 
> stronger  I am praying for your side pain to go away, for sure.  I'd like 
> for you to get to the bottom of that.  There's something causing it.  Have 
> you considered having that pet scan I mentioned?  The earlier something is 
> caught, of course the better.
> 
> Blessings and love to you as you enjoy every day as a gift.  18's,
> SZ
> 
> 
> 
> 
> -Original Message-
> From: 'Icandoallttc' via CMLHope <cmlhope@googlegroups.com>
> To: cmlhope <cmlhope@googlegroups.com>
> Sent: Mon, Jan 4, 2016 5:21 pm
> Subject: Re: [CMLHope] Re: stroke
> 
> Hi Susan ,
> Just wanted to tell you that my mom and grandmother both had strokes in their 
> late 70s. 
> My sister died of a stroke in her late 60s. So it runs in the women of my 
> family.  
> Of course they weren't on tkis but we're on medicines for other things. 
> My doctor warned me to keep my BP down to avoid strokes while on ponatinib.  
> Well all the BP meds make me sick so I can't take them. 
> I think we have a lot of stress due to the CML and worrying about the meds we 
> take; I know I do. 
> Good luck and continue to mend and thanks for the info on strokes.  
> My mom was completely out of it when she had her stroke. She had to learn to 
> read and write again and attended those therapies. 
> After a while she became her old self again until she fell and broke her hip. 
> ❤️
> 
> My Motto: Faith and Pills
> Jeanie 18,s 
> Dx 1/2004. CML Leukemia
> Started Gleevec 2/2004
> Started Tasigna  9/2009
> Started Sprycel 11/2009
> Started Ponatinib January 2015
> Dr Balducci Moffitt Cancer Center
> 
> On Jan 3, 2016, at 9:00 PM, 'Susan Zimmerman' via CMLHope 
> <cmlhope@googlegroups.com> wrote:
> 
> Hi Jeanie,
> I have had four previous strokes, all due to trying the four other meds that 
> are out.  With gleevec I had two strokes while I was on it that were minor.  
> The docs were not convinced the gleevec caused it, but I was!  Then 2 years 
> after being off all drugs for cml, I had a major stroke which at first left 
> my eye frozen, and damaged hearing, along with balance problems.  Thankfully, 
> those things all went away after 3 months.  I am most blessed.  Then each 
> other pill I tried, (all 3 others) I had a symptom of stroke almost 
> immediately.  (bad eye bleed, frozen eye like the big stroke).  They could 
> only find cavernous malformations in my brain to lend itself to such easy 
> bleeding.  About 9 months ago I went back on the last drug, bosulif, because 
> my numbers were getting pretty high after 7 yrs of no meds at all.  I started 
> with 100 mg of bosulif, which is very low. The usual dose is 500 mg.  When my 
> numbers went up just a little after being in remission, the docs suggested I 
> go to 300 mg.  I agreed only to 200 mg.  So this time, I had doubled my 
> dosage, and 10 days later, had double vision and severe nausea all afternoon 
> right when we were sharing Christmas with my son and whole family on the 
> 26th.  I wasn't sure about it, I thought it might be all the sugar I ate, as 
> I am diabetic.  So decided just to hit the bed for the evening so as not to 
> ruin their visit.  Kids left next day. Then on Wednesday, continuing the 
> double vision somewhat, I vomited.  The docs had all said one more symptom 
> get to the e.r., so I went.  Sure enough, the ct scan showed 4 new blood 
> spots in four different parts of my brain. (that was a new one, usually they 
> were all in same place.)  Luckily very little was affected this time, 
> halleluhiah!
> 
> Long ago the statistics used to be only 1% had brain bleeds, i.e. strokes 
> from these medications.  I am one of the 1%.  Don't know if the