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]

Never thought I’d end my life being sick and of being sick and tired. My hubby 
and I bought almost 100 acres to entire on but God had a different plan
He died of heart problems when he was 62. Way too young. 
I decided not to remarry but I have children that help me a lot 
Found out I have thyroid disease a few months ago. I had this beautiful
Head of long blond hair and most of it has fallen out. Lost 30 pounds. Eye 
problems. Don’t think my dr knows about thyroid problems.  Marty was just 
fixing to help me when he passed. Miss him so much. Does anyone have his sons 
email?  I wanted to talk to him about his book. 
Well everyone stay well and let us know w how u are. Love ya. 
❤️♥️

> 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 th

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

[sherri swanson]

Hi Norm,

I am glad to see that you are doing well. I have been having trouble with
my heart too and the doctor thought it might be from the Gleevec, but I too
have a history of heart issues in my family, and told the doctor I want to
go with that. The god news, I have not had any heart attacks or surgeries
on my heart and I hope to keep it that way.
I have been on Gleevec for 18 years and have had every side effect there is
from it more time than I can count. I really enjoy the eye bleeds. Those
are the best when I go out to the store and people stare at me and wonder
who punched me in the eye? At least it doesn't hurt, it is just unsightly.

I'm glad to hear that you got to walk you daughter down the isle and I'm
sure she was thrilled to have you there on her special day. I beat my
husband to retirement too. I've been retired for 15 years, and in the
beginning I didn't know what to do with myself.  Then my husband said he
was going to retire 5 years after I was retired and he was home about a
week before I wanted to go back to work. 

All in all life is good as you said and I am glad to see each day. Like
you, I am trying to understand why each day there is a new pain but I
refuse to let the pain stop me. I just keep going and never give in to the
pain. Until the end of the day when I put my feet up. I don't have cat like
reflexes, I am more like a pinball game. I tend to get stuck in the doorway
and bounce around or bounce off the wall into the other wall. I find it
easier to get around the house that way. So now I am going to play water
volleyball and have a good time.

Hope you have a great day and keep those cat like reflexes working.

Sherri

On Tue, 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 <https://go.microsoft.com/fwlink/?LinkId=550986> 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
> <https://groups.google.com/forum/?utm_source=digest_medium=email#!forum/cmlhope/topics>
>  Google
> Groups
> <https://groups.google.com/forum/?utm_source=digest_medium=email/#!overview>
> <https://groups.google.com/forum/?utm_source=digest_medium=email/#!overview>
> Topic digest
> View all topics
> <https://grou

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

['icandoallttc' via CMLHope]

Hi norm 
Just wanted you to know my hubby 
Of 42 years passed away when he was 62 from heart disease due to diabetes.  He 
had quadrupleBypass surgery when he was about 52 and never had CML so 
Go figure. He lived About 10 years after surgery.  Give those hands and feet 
daily massages and keep on going.  
Love
JeAnie


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

> 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

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

['icandoallttc' via CMLHope]

Hi Norma 
So glad to hear from you and all. You and I are about the 
Same. I was dx 2004
And put on Gleevec. Too many side
Effects to mention. I am 81. 
Got the mutations and am on 
Ponatinib put me in remission in 4
3 months.  Hang in there. 
Talk later. 
Love you so very much
Jeanie


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

> 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 11/2

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

[Joyce Mesnarich]

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  
> mailto: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 mailto:icandoall...@aol.com>>: 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 04:06PM 
> 
> HI Jeannie. I have not heard from anyone in a long while. This is Beth. Hope 
> everyone out 

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

[N Quade]

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<https://go.microsoft.com/fwlink/?LinkId=550986> 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<https://groups.google.com/forum/?utm_source=digest_medium=email#!forum/cmlhope/topics>
 Google 
Groups<https://groups.google.com/forum/?utm_source=digest_medium=email/#!overview>
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<https://groups.google.com/forum/?utm_source=digest_medium=email/#!overview>
Topic digest
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topics<https://groups.google.com/forum/?utm_source=digest_medium=email#!forum/cmlhope/topics>

  *   Not getting any mail - 6 Updates
  *   Is this correct - 1 Update

Not getting any mail 
<http://groups.google.com/group/cmlhope/t/1cabbe0269ae2e77?utm_source=digest_medium=email>
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 04:06PM

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 t

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

['Jeanie' via CMLHope]

I drink I can daily because I like it.  I wish I had known it reduced platelets 
when mine were so high.  Hehe

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
Doctor Balducci Moffitt Cancer Center 

> On Oct 20, 2016, at 8:08 AM, Ralph Bruno  wrote:
> 
> Marty - thanks for the link to the tonic water study.  Yes, it helps my 
> cramping a lot but, unlike the subject of this study, I don't 'celebrate' 
> with over a quart of tonic water for 2 consecutive days.  They also fail to 
> mentioned what he mixed with it in his celebration.  :)
> 
> Used in moderation and on occasion, say 6-8 ounces when cramping in my feet, 
> calves and hands keep me up at night, it's effective.  I wouldn't recommend 
> drinking as much of the individual in the study admits to.  Doesn't taste 
> that great either.
> 
> Regards,
> 
> >...rb
> 
>> On Wed, Oct 19, 2016 at 6:11 AM,  wrote:
>> 
>> cmlhope@googlegroups.com Google Groups  
>> Topic digest 
>> View all topics
>> Zavies list and cramps - 4 Updates
>> Digest for cmlhope@googlegroups.com - 5 updates in 1 topic - 3 Updates
>> Zavies list and cramps   
>> bvision : Oct 18 06:17AM -0700 
>> 
>> Please add me to the Z's list too. Gleevec from 2003-2008, Tasigna 
>> 2008-present.
>>  
>> Also, try tonic water for those cramps. I always keep bottles of Schweps 
>> or Canada Dry in the fridge. Just down an 8 ounce glass and be amazed. 
>> Works for me, has trace amounts of quinine, I'm told.
>>  
>> Blessings to all
>>  
>> Susan Rosenthal : Oct 18 11:07PM -0400 
>> 
>> Be careful with tonic water if your hemoglobin is low. It is possible to 
>> have it go lower.
>>  
>> Hugs,
>> Susan Rosenthal
>>  
>> Have a wonderful day
>>  
>> Marty Gartenberg : Oct 18 11:53PM -0400 
>> 
>> Please read this about Tonic Water, stay away from it. I guess that rb you
>> are being helped rather then hurt by it.
>>  
>> https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4365124/
>>  
>> 18's
>>  
>> Marty
>>  
>> On Tue, Oct 18, 2016 at 11:07 PM, 'Susan Rosenthal' via CMLHope <
>> Marty Gartenberg : Oct 18 11:54PM -0400 
>> 
>> Back to top
>> Digest for cmlhope@googlegroups.com - 5 updates in 1 topic 
>> "(null) (null)" : Oct 18 07:27AM -0400 
>> 
>> Put me on the zero list,
>> Kathy Cheatwood on Gleevec for 17 years
>>  
>> Sent from my iPad
>>  
>> Jeanie : Oct 18 08:25AM -0400 
>> 
>> Do you know your number?? I'll see if I can find it. Thanks and God bless. 
>>  
>> 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
>> Doctor Balducci Moffitt Cancer Center 
>>  
>> bvision : Oct 18 06:12AM -0700 
>> 
>> Please add me to the Z's list too. Gleevec from 2003-2008, Tasigna 
>> 2008-present.
>> Also, try tonic water for those cramps. I always keep bottles of Schweps 
>> or Canada Dry in the fridge, just down an 8 ounce glass and be amazed.
>> Blessings to all
>>  
>> >...rb
>>  
>> On Tuesday, October 18, 2016 at 7:28:02 AM UTC-4, (null) (null) wrote:
>> Back to top
>> You received this digest because you're subscribed to updates for this 
>> group. You can change your settings on the group membership page.
>> To unsubscribe from this group and stop receiving emails from it send an 
>> email to cmlhope+unsubscr...@googlegroups.com.
> 
> -- 
> -- 
> [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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Re: [CMLHope] Digest for cmlhope@googlegroups.com - 7 updates in 2 topics

[Ralph Bruno]

Marty - thanks for the link to the tonic water study.  Yes, it helps my
cramping a lot but, unlike the subject of this study, I don't 'celebrate'
with over a quart of tonic water for 2 consecutive days.  They also fail to
mentioned what he mixed with it in his celebration.  :)

Used in moderation and on occasion, say 6-8 ounces when cramping in my
feet, calves and hands keep me up at night, it's effective.  I wouldn't
recommend drinking as much of the individual in the study admits to.
Doesn't taste that great either.

Regards,

>...rb

On Wed, Oct 19, 2016 at 6:11 AM,  wrote:

> cmlhope@googlegroups.com
> 
>  Google
> Groups
> 
> 
> Topic digest
> View all topics
> 
>
>- Zavies list and cramps <#m_-8894840648203061180_group_thread_0> - 4
>Updates
>- Digest for cmlhope@googlegroups.com - 5 updates in 1 topic
><#m_-8894840648203061180_group_thread_1> - 3 Updates
>
> Zavies list and cramps
> 
> bvision : Oct 18 06:17AM -0700
>
> Please add me to the Z's list too. Gleevec from 2003-2008, Tasigna
> 2008-present.
>
> Also, try tonic water for those cramps. I always keep bottles of Schweps
> or Canada Dry in the fridge. Just down an 8 ounce glass and be amazed.
> Works for me, has trace amounts of quinine, I'm told.
>
> Blessings to all
>
> Susan Rosenthal : Oct 18 11:07PM -0400
>
> Be careful with tonic water if your hemoglobin is low. It is possible to
> have it go lower.
>
> Hugs,
> Susan Rosenthal
>
> Have a wonderful day
>
> Marty Gartenberg : Oct 18 11:53PM -0400
>
> Please read this about Tonic Water, stay away from it. I guess that rb you
> are being helped rather then hurt by it.
>
> https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4365124/
>
> 18's
>
> Marty
>
> On Tue, Oct 18, 2016 at 11:07 PM, 'Susan Rosenthal' via CMLHope <
> Marty Gartenberg : Oct 18 11:54PM -0400
>
> Back to top <#m_-8894840648203061180_digest_top>
> Digest for cmlhope@googlegroups.com - 5 updates in 1 topic
> 
> "(null) (null)" : Oct 18 07:27AM -0400
>
> Put me on the zero list,
> Kathy Cheatwood on Gleevec for 17 years
>
> Sent from my iPad
>
> Jeanie : Oct 18 08:25AM -0400
>
> Do you know your number?? I'll see if I can find it. Thanks and God bless.
>
> 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
> Doctor Balducci Moffitt Cancer Center
>
> bvision : Oct 18 06:12AM -0700
>
> Please add me to the Z's list too. Gleevec from 2003-2008, Tasigna
> 2008-present.
> Also, try tonic water for those cramps. I always keep bottles of Schweps
> or Canada Dry in the fridge, just down an 8 ounce glass and be amazed.
> Blessings to all
>
> >...rb
>
> On Tuesday, October 18, 2016 at 7:28:02 AM UTC-4, (null) (null) wrote:
> Back to top <#m_-8894840648203061180_digest_top>
> You received this digest because you're subscribed to updates for this
> group. You can change your settings on the group membership page
> 
> .
> To unsubscribe from this group and stop receiving emails from it send an
> email to cmlhope+unsubscr...@googlegroups.com.
>

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

[wingrider43]

Please add me to the list.  Janet Robertson, Tavares, FL Gleevec 2003 – present.

Sent from Mail for Windows 10

From: cmlhope@googlegroups.com
Sent: Wednesday, October 19, 2016 6:11 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 
• Zavies list and cramps - 4 Updates 
• Digest for cmlhope@googlegroups.com - 5 updates in 1 topic - 3 Updates 
Zavies list and cramps 
bvision <bvisio...@gmail.com>: Oct 18 06:17AM -0700 

Please add me to the Z's list too. Gleevec from 2003-2008, Tasigna 
2008-present.
 
Also, try tonic water for those cramps. I always keep bottles of Schweps 
or Canada Dry in the fridge. Just down an 8 ounce glass and be amazed. 
Works for me, has trace amounts of quinine, I'm told.
 
Blessings to all
 
Susan Rosenthal <educatorsu...@aol.com>: Oct 18 11:07PM -0400 

Be careful with tonic water if your hemoglobin is low. It is possible to have 
it go lower.
 
Hugs,
Susan Rosenthal
 
Have a wonderful day
 
Marty Gartenberg <wa2...@gmail.com>: Oct 18 11:53PM -0400 

Please read this about Tonic Water, stay away from it. I guess that rb you
are being helped rather then hurt by it.
 
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4365124/
 
18's
 
Marty
 
On Tue, Oct 18, 2016 at 11:07 PM, 'Susan Rosenthal' via CMLHope <
Marty Gartenberg <wa2...@gmail.com>: Oct 18 11:54PM -0400 
Back to top 
Digest for cmlhope@googlegroups.com - 5 updates in 1 topic 
"(null) (null)" <kathycheatw...@yahoo.com>: Oct 18 07:27AM -0400 

Put me on the zero list,
Kathy Cheatwood on Gleevec for 17 years
 
Sent from my iPad
 
Jeanie <icandoall...@aol.com>: Oct 18 08:25AM -0400 

Do you know your number?? I'll see if I can find it. Thanks and God bless. 
 
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
Doctor Balducci Moffitt Cancer Center 
 
bvision <bvisio...@gmail.com>: Oct 18 06:12AM -0700 

Please add me to the Z's list too. Gleevec from 2003-2008, Tasigna 
2008-present.
Also, try tonic water for those cramps. I always keep bottles of Schweps 
or Canada Dry in the fridge, just down an 8 ounce glass and be amazed.
Blessings to all
 
>...rb
 
On Tuesday, October 18, 2016 at 7:28:02 AM UTC-4, (null) (null) wrote:
Back to top 
You received this digest because you're subscribed to updates for this group. 
You can change your settings on the group membership page.
To unsubscribe from this group and stop receiving emails from it send an email 
to cmlhope+unsubscr...@googlegroups.com. 


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

['Susan Rosenthal' via CMLHope]

Richard:

Awesome news!  Please make sure that you're monitored every three months.  I've 
been on 250 mg since 2008...monitored PCR and PK testing every three months by 
Dr. Druker.  I'm visiting with him in July.  I think he will further reduce me 
to 200mg since I'm still have eye bleeds, eye swelling, cramping has been okay 
but not great, some edema in my ankles, among the many side effects.  But, hey, 
I'm alive and have 4 grandchildren now!!!

Marty, I'm so glad you are aiming to continue to have better health everyday!

Sherri, that's VERY exciting news about your PCR.  Dancing in the rain is a 
great spirit...means nothing is going to phase you when you're flying high!

I just got a reminder today that Zavie's birthday is on June 4th.  A flood of 
great memories and sad ones flew in my face.  I miss him terribly.  Zavie 
ALWAYS gave us hope when we thought here was not any hope.  In 2003, I emailed 
him once I began Gleevec.  I explained that I had a low grade temperature.  He 
said that I was not supposed to have a temperature.  But I did and it was 100.5 
annoyingly. I guess I should have known from that day forward my journey would 
be much different than anyone else's but we did not know this until 6 months 
later.  Zavie learned many new things from me and I learned a lot from Zavie.

It's an amazing journey because Dr. Druker also learned a lot of things about 
me and my Gleevec journey.  I am still on Gleevec and still very much alive and 
just take each day as a new day learning to solve problems as they appear, 
when they appear and if they appear.

The irony is that there are new TKIs out there and doctors nowadays will switch 
a patient immediately.  It is Dr, Druker's and my thoughts that if the switches 
happen so frequently now that there will not be options out there for others if 
they've gone through them all.  Like Dr. Druker told me two years ago, he was 
glad we stuck with the Gleevec because I still have MANY options out there in 
case Gleevec stops working for me.  This gives me a very soft cloud to rest on 
everyday.

Hugs,
Susan Rosenthal
Miami, Florida
Ex on January ..rvb 
Sent from my iPad

 On May 28, 2015, at 6:22 AM, cmlhope@googlegroups.com wrote:
 
 
 cmlhope@googlegroups.com  Google Groups  
 Topic digest
 View all topics
 A bit of good news today - 4 Updates
 Today's Doctor visit - 3 Updates
 A bit of good news today   
 sherri swanson swanson.sherri...@gmail.com: May 27 02:04PM -0500 
 
 Hi Everyone!
  
 In the mist of all the bad news I've been getting lately, I got some good
 news this afternoon. My Onc called me to tell me that my BCR/ABL was
 undetectable. So with that that good news still ringing in my ears, I went
 for walk. AS I was walking it started to rain. I just didn't care. I
 continued my walk like it was a sunny day and 85 degrees. I really needed
 that good news.
  
 L'chaim
  
 Sherri
 Icandoallttc icandoall...@aol.com: May 27 04:13PM -0400 
 
 Great news Richard and Sherri. You are truly cml warriors!! Keep the faith. 
  
 Prayers  Blessings Jeanie 18,s
 Dx 1/2004
 Started Gleevec 2/2004
 Started Tasigna 9/2009
 Started Sprycel 11/2009
 Started Ponatinib January 2015
  
 Marty Gartenberg wa2...@gmail.com: May 27 06:57PM -0400 
 
 Sherri
  
 PCRU! EXCELENT
  
 18's for sure.
  
 Marty[?] You need a great big hug!
  
 On Wed, May 27, 2015 at 3:04 PM, sherri swanson swanson.sherri...@gmail.com
 Richard H rbhuffm...@gmail.com: May 27 08:51PM -0700 
 
 Great News. Toy deserve it. Someplace in my gospel collection is a song 
 called Steppin Out on the Clouds .. Keep thinking how great it is to be 
 able go Dancing in the Rain and watch your energy grow.
  
 18's
  
 Richard H..
  
 On Wednesday, May 27, 2015 at 2:04:48 PM UTC-5, Mosey wrote:
  
 Back to top
 Today's Doctor visit   
 Marty Gartenberg wa2...@gmail.com: May 27 09:37AM -0400 
 
 Richard, I'm not going to be polite so here it is. YOU ARE KICKING *ASS*.
 Yea!!!
  
 So you now deserve this poem.
  
 EXPECT THE BEST, MIND OVER MATTER. SUCCESS IS A FUNCTION OF SELF
 CONFIDENCE. TO HAVE SUCCESS AT ANYTHING YOU MUST FIRST LEARN TO BELIEVE IN
 YOURSELF. IF YOU EXPECT THE WORSE THEN THAT IS EXACTLY WHAT YOU WILL GET
 (MIND OVER MATTER) IF YOU EXPECT THE BEST THEN THAT IS WHAT YOU WILL GET.
  
 WHAT WE HAVE TO LEARN TO DO IS TO CHANGE OUR MENTAL HABITS, OUR STATES OF
 MIND. LEARN TO EXPECT AND NOT TO DOUBT. BY DOING THIS YOU BRING EVERYTHING
 INTO THE REALM OF POSSIBILITY. WHEN YOU LEARN TO BELIEVE THEN WHAT YOU
 THOUGHT TO BE IMPOSSIBLE THEN MOVES INTO THE AREA OF POSSIBILITY.
  
 EVERY GREAT THING EVENTUALLY BECOMES POSSIBLE FOR YOU. MY BELIEF AT THE
 BEGINNING OF A DOUBTFUL UNDERTAKING IS THE ONE THING THAT INSURES THE
 SUCCESSFUL OUTCOME...
  
 FOCUS...
  
 18's,
  
 Marty
  
 margoo...@aol.com: May 27 12:42PM -0400 
 
 Congratulations, Richard. Great news!
  
  
  
 -Original Message-
 From: Richard H rbhuffm...@gmail.com
 To: 

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

['BOOGIE_WOOGIE' via CMLHope]

Hi  everyone...
My dr took me off Gleevec a year ago am on Sprycel now and am doing well.I have 
two bottles of Gleevec unopened...any suggestions what to do with theleftover 
Gleevec  BOOGIE WOOGIE 

 On Friday, February 27, 2015 2:15 AM, cmlhope@googlegroups.com 
cmlhope@googlegroups.com wrote:
   
 

   
|cmlhope@googlegroups.com   |  Google Groups  ||

Topic digest 
  View all topics 
   -   Dr. Druker and Marty - 2 Updates 
   -   Doctor's Visit - 5 Updates 
Dr. Druker and Marty   
|   Susan Rosenthal educatorsu...@aol.com: Feb 26 10:28PM -0500  

 Susan:
 
I do not remember meeting you or Sharon. However, I was chosen by the LLS to 
introduce him…I thought that was a real honor. 
 
He is as awesome as you saw him as he is a doctor.
 
Every having CML does indeed have their own story to tell, that is for sure.
 
Hugs,
Susan
-
 
Marty:
 
Thinking of you…only 18's for you!!!
 
Hugs,
Susan
  |
|   Joyce Mesnarich joy...@htc.net: Feb 27 12:37AM -0600  

 I may have missed a post, but are we sure that Marty indeed got his new 
kidney? I'm still praying that he did and that things are going well.
 Joyce in IL
 
 
On Feb 26, 2015, at 9:28 PM, 'Susan Rosenthal' via CMLHope wrote:
 
  |

  Back to top Doctor's Visit   
|   Marcie Goodman margoo...@aol.com: Feb 26 11:19AM -0500  

 Hi Beth,
 
I think Marty had the transplant and I'm praying all is going well for him. How 
are you feeling? You are such a positive, joyful person and I always look 
forward to your posts. 
 
Best wishes,
 
Marcie
 
Sent from my iPad
 
  |
|   bkbar...@aol.com: Feb 26 02:59PM -0500  

 HI all, I agree with Marcie, and Sherri. I think the kidney was a match or we 
would have heard...so lets all keep sending up lots of prayers and light and 
joy and laughter to our favorite 18s man...he's been through a lot waiting 
for this kidney and these things are not easy..but he is a trooper with a 
fantastic attitude, And I we need him...
 
 
I am hanging in there, thanks for asking, struggling, but feel closer to some 
answers coming my way of what is going on and how to treat itshould know 
more in the next couple of weeks. Not doing BCR until March 16th, so no results 
until the 26th or so...will feel much better when I have clarity that at least 
that is going back in the right direction. All of you stay well. Take good care 
and stay close.
18's
Love, Beth
 
 
 
-Original Message-
From: 'Marcie Goodman' via CMLHope cmlhope@googlegroups.com
To: cmlhope cmlhope@googlegroups.com
Sent: Thu, Feb 26, 2015 10:49 am
Subject: Re: [CMLHope] Doctor's Visit
 
 
 
Hi Beth, 
 
 
 
 
I think Marty had the transplant and I'm praying all is going well for him. How 
are you feeling? You are such a positive, joyful person and I always look 
forward to your posts. 
 
 
 
 
Best wishes, 
 
 
 
 
Marcie 
 
Sent from my iPad 
 
 
On Feb 26, 2015, at 5:01 AM, sherri swanson  swanson.sherri...@gmail.com 
wrote: 
 
 
 
 
 
 
 Hi Beth, 
 
 
 
 I was think the same thing you were. I've been sending all the good thoughts I 
could find to Marty and since we've not heard from him, it must have been a 
match. Let's just keep praying that the kidney was a match and everything goes 
well. He is such a wonderful person.
 
 
 
 Have a good day. 
 
 
 
 L'chaim,
 
 
 
 Sherri 
 
 
 
 
 
On Wed, Feb 25, 2015 at 4:37 PM, bkbarney via CMLHope 
cmlhope@googlegroups.com wrote: 
 
 Hi all. I think our not hearing from Marty, is a sign that the kidney was a 
match. otherwise he would have posted that it did not work out and he is still 
waiting? Does anybody think the same? If this is true,then he would have had 
his surgery...so lets all keep sending healing energy and good thoughts, love, 
his way. 
 
 
 
I am wondering, if anyone who has been on sprycel, has developed any other 
forms of cancer while on it? Thanks, Beth 
 
 
 
-Original Message- 
 From: ICANDOALLTTC via CMLHope  cmlhope@googlegroups.com 
 To: cmlhope  cmlhope@googlegroups.com 
 Sent: Wed, Feb 25, 2015 8:10 am 
 Subject: Re: [CMLHope] Doctor's Visit 
 
 
 
 
 Hi Richard and good to hear from you. 
 
 I had the worst side effects on Gleevec than any other TKI I have taken, 
except for the one I am on now, Ponatinib. Boils, cramps, nausea and etc. Yes 
and eye bleeds. Also and infected eye that never seemed to heal. Ponatinib is 
hitting me with everything its got. I am seeing lights that aren't there and 
things in my side vision that aren't there. When I close my eyes at night, the 
things are still there. I was never on LSD but this feels like something like 
it. Going for blood check up tomorrow; pray that it comes out ok.  
 
 Has anyone heard from Marty? Pray that he is ok. 
 
 Blessings 
 
 Jeanie3 
 
 
 
 
 In a message dated 2/24/2015 1:09:55 P.M. Eastern Standard Time, 
cmlhope@googlegroups.com writes: 
 
 Richard, 

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

[Maria Cashion]

Also check this list, save it, it may become helpfull:
http://www.cmleukemia.com/sites--english-and-other-languages.html

Maria

On Sun, Feb 22, 2015 at 8:32 AM, Maria Cashion mariacash...@gmail.com
wrote:

 Please check out this other link  when you have a chance.

 http://cml-iq.com/grapefruit-effect-need-know/

 Love you all!

 Maria





 M


 On Sun, Feb 22, 2015 at 8:28 AM, Maria Cashion mariacash...@gmail.com
 wrote:

 This is the link to the National CML Society directly to drug and food
 interactions:
 http://www.nationalcmlsociety.org/living-cml/drug-food-interactions

 LOVE YOU ALL!
 Maria

 On Sun, Feb 22, 2015 at 6:23 AM, cmlhope@googlegroups.com wrote:

 cmlhope@googlegroups.com
 https://groups.google.com/forum/?utm_source=digestutm_medium=email#!forum/cmlhope/topics
   Google
 Groups
 https://groups.google.com/forum/?utm_source=digestutm_medium=email/#!overview
 https://groups.google.com/forum/?utm_source=digestutm_medium=email/#!overview
   Topic digest
  View all topics
 https://groups.google.com/forum/?utm_source=digestutm_medium=email#!forum/cmlhope/topics

-  ponatinib info
#14bb145e92079af9_14bb142388125a7d_14bb0d02294a4d46_group_thread_0
- 5 Updates
-  Food that interacts with TKI's and other meds
#14bb145e92079af9_14bb142388125a7d_14bb0d02294a4d46_group_thread_1
- 2 Updates

   ponatinib info
 http://groups.google.com/group/cmlhope/t/5dfb95c0229110ae?utm_source=digestutm_medium=email
   Icandoallttc icandoall...@aol.com: Feb 21 10:18AM -0500

 Hi John
 Do you you remember how long the eye problem lasted! I have been having
 them a few times daily now thanks.


 Prayers  Blessings Jeanie [image: ][image: ][image: ][image: ][image:
 ][image: ][image: ][image: ][image: ][image: ][image: ][image:
 ]. 18,s

   John Barrons jlbca2...@yahoo.ca: Feb 21 03:55PM

 Hi I had them quite a long time go. Each aura lasted about 3 to 5
 minutes. They occurred very intermittingly.  Never found out why. I would
 like to ask what does 18,s mean?

 On Saturday, February 21, 2015 10:18 AM, 'Icandoallttc' via CMLHope 
 cmlhope@googlegroups.com wrote:


 Hi John Do you you remember how long the eye problem lasted!  I have
 been having them a few times daily now thanks.

 Prayers  Blessings Jeanie [image: ][image: ][image: ][image: ][image:
 ][image: ][image: ][image: ][image: ][image: ][image: ][image:
 ]. 18,s
 On Feb 19, 2015, at 3:16 PM, Icandoallttc icandoall...@aol.com wrote:



 Thanks John. That's what I having but with pain.  I have suffered with
 migraines most of my adult life but this is different.  I hope it's a side
 effect that will go away.  Looks like the media working --yahoo!

 Prayers  Blessings Jeanie [image: ][image: ][image: ][image: ][image:
 ][image: ][image: ][image: ][image: ][image: ][image: ][image:
 ]. 18,s
 On Feb 19, 2015, at 11:47 AM, 'John Barrons' via CMLHope 
 cmlhope@googlegroups.com wrote:


 I have a few auras which I understand they are migraine headaches
 without the pain. I had an MRI to see if there was a problem and there
 wasn't. Haven't them for a long time. No headaches or rashes. John b

 On Thursday, February 19, 2015 11:28 AM, 'Icandoallttc' via CMLHope 
 cmlhope@googlegroups.com wrote:


 Hi John and thanks for walking me through this new med.   Got a light
 rash.   Did you ever have an eye problem with headache?Thanks again.
 Prayers  Blessings Jeanie [image: ][image: ][image: ][image: ][image:
 ][image: ][image: ][image: ][image: ][image: ][image: ][image:
 ]. 18,s
 On Feb 19, 2015, at 11:01 AM, 'John Barrons' via CMLHope 
 cmlhope@googlegroups.com wrote:


 That's great your down to one pill a day. I am still on two a week. over
 the last to weeks my counts have stayed the same except for wbc up from 5
 to 7. John B

 On Thursday, February 19, 2015 10:33 AM, 'Icandoallttc' via CMLHope 
 cmlhope@googlegroups.com wrote:


 Thanks Marty. I will get some.  Thank heavens it doesn't itch. My blood
 counts were good today.   Platelets 152.  Doctor put me down to 1 pill
 daily of ponatinib.  Phosphatase is still high.  Going to be a guessing
 game till I get stable.  You are right--still here fighting.  Glad you
 finally got some relief.

 Prayers  Blessings Jeanie [image: ][image: ][image: ][image: ][image:
 ][image: ][image: ][image: ][image: ][image: ][image: ][image:
 ]. 18,s
 On Feb 18, 2015, at 7:43 PM, Marty Gartenberg wa2...@gmail.com wrote:


 Hi Jeanie and all of the rest,
 I really feel badly for you having to go through all of this, but on the
 bright side your all stil here to go through this.
 As far as the rash and not being able to put anything on it, well that
 really sucks. When will you be allowed to put something on your rash?
 When I had my total body radiation my skin was burnt, my fingers, toes,
 nose, ears feet, hands and other parts of my body were burned and looked
 like I was in a fire. I was told that while I was having the radiation
 

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

[Maria Cashion]

Please check out this other link  when you have a chance.

http://cml-iq.com/grapefruit-effect-need-know/

Love you all!

Maria





M


On Sun, Feb 22, 2015 at 8:28 AM, Maria Cashion mariacash...@gmail.com
wrote:

 This is the link to the National CML Society directly to drug and food
 interactions:
 http://www.nationalcmlsociety.org/living-cml/drug-food-interactions

 LOVE YOU ALL!
 Maria

 On Sun, Feb 22, 2015 at 6:23 AM, cmlhope@googlegroups.com wrote:

 cmlhope@googlegroups.com
 https://groups.google.com/forum/?utm_source=digestutm_medium=email#!forum/cmlhope/topics
   Google
 Groups
 https://groups.google.com/forum/?utm_source=digestutm_medium=email/#!overview
 https://groups.google.com/forum/?utm_source=digestutm_medium=email/#!overview
   Topic digest
  View all topics
 https://groups.google.com/forum/?utm_source=digestutm_medium=email#!forum/cmlhope/topics

-  ponatinib info #14bb142388125a7d_14bb0d02294a4d46_group_thread_0
- 5 Updates
-  Food that interacts with TKI's and other meds
#14bb142388125a7d_14bb0d02294a4d46_group_thread_1 - 2 Updates

   ponatinib info
 http://groups.google.com/group/cmlhope/t/5dfb95c0229110ae?utm_source=digestutm_medium=email
   Icandoallttc icandoall...@aol.com: Feb 21 10:18AM -0500

 Hi John
 Do you you remember how long the eye problem lasted! I have been having
 them a few times daily now thanks.


 Prayers  Blessings Jeanie [image: ][image: ][image: ][image: ][image:
 ][image: ][image: ][image: ][image: ][image: ][image: ][image:
 ]. 18,s

   John Barrons jlbca2...@yahoo.ca: Feb 21 03:55PM

 Hi I had them quite a long time go. Each aura lasted about 3 to 5
 minutes. They occurred very intermittingly.  Never found out why. I would
 like to ask what does 18,s mean?

 On Saturday, February 21, 2015 10:18 AM, 'Icandoallttc' via CMLHope 
 cmlhope@googlegroups.com wrote:


 Hi John Do you you remember how long the eye problem lasted!  I have been
 having them a few times daily now thanks.

 Prayers  Blessings Jeanie [image: ][image: ][image: ][image: ][image:
 ][image: ][image: ][image: ][image: ][image: ][image: ][image:
 ]. 18,s
 On Feb 19, 2015, at 3:16 PM, Icandoallttc icandoall...@aol.com wrote:



 Thanks John. That's what I having but with pain.  I have suffered with
 migraines most of my adult life but this is different.  I hope it's a side
 effect that will go away.  Looks like the media working --yahoo!

 Prayers  Blessings Jeanie [image: ][image: ][image: ][image: ][image:
 ][image: ][image: ][image: ][image: ][image: ][image: ][image:
 ]. 18,s
 On Feb 19, 2015, at 11:47 AM, 'John Barrons' via CMLHope 
 cmlhope@googlegroups.com wrote:


 I have a few auras which I understand they are migraine headaches without
 the pain. I had an MRI to see if there was a problem and there wasn't.
 Haven't them for a long time. No headaches or rashes. John b

 On Thursday, February 19, 2015 11:28 AM, 'Icandoallttc' via CMLHope 
 cmlhope@googlegroups.com wrote:


 Hi John and thanks for walking me through this new med.   Got a light
 rash.   Did you ever have an eye problem with headache?Thanks again.
 Prayers  Blessings Jeanie [image: ][image: ][image: ][image: ][image:
 ][image: ][image: ][image: ][image: ][image: ][image: ][image:
 ]. 18,s
 On Feb 19, 2015, at 11:01 AM, 'John Barrons' via CMLHope 
 cmlhope@googlegroups.com wrote:


 That's great your down to one pill a day. I am still on two a week. over
 the last to weeks my counts have stayed the same except for wbc up from 5
 to 7. John B

 On Thursday, February 19, 2015 10:33 AM, 'Icandoallttc' via CMLHope 
 cmlhope@googlegroups.com wrote:


 Thanks Marty. I will get some.  Thank heavens it doesn't itch. My blood
 counts were good today.   Platelets 152.  Doctor put me down to 1 pill
 daily of ponatinib.  Phosphatase is still high.  Going to be a guessing
 game till I get stable.  You are right--still here fighting.  Glad you
 finally got some relief.

 Prayers  Blessings Jeanie [image: ][image: ][image: ][image: ][image:
 ][image: ][image: ][image: ][image: ][image: ][image: ][image:
 ]. 18,s
 On Feb 18, 2015, at 7:43 PM, Marty Gartenberg wa2...@gmail.com wrote:


 Hi Jeanie and all of the rest,
 I really feel badly for you having to go through all of this, but on the
 bright side your all stil here to go through this.
 As far as the rash and not being able to put anything on it, well that
 really sucks. When will you be allowed to put something on your rash?
 When I had my total body radiation my skin was burnt, my fingers, toes,
 nose, ears feet, hands and other parts of my body were burned and looked
 like I was in a fire. I was told that while I was having the radiation
 treatments I could not put anything on any of these very severe burns, and
 I really suffered through it.
 As soon as my treatments were over they gave me Keri oil, then lotion.
 Both of them did very little to help me. Then a friend of mine told me
 about Bag 

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

[Maria Cashion]

This is the link to the National CML Society directly to drug and food
interactions:
http://www.nationalcmlsociety.org/living-cml/drug-food-interactions

LOVE YOU ALL!
Maria

On Sun, Feb 22, 2015 at 6:23 AM, cmlhope@googlegroups.com wrote:

 cmlhope@googlegroups.com
 https://groups.google.com/forum/?utm_source=digestutm_medium=email#!forum/cmlhope/topics
   Google
 Groups
 https://groups.google.com/forum/?utm_source=digestutm_medium=email/#!overview
 https://groups.google.com/forum/?utm_source=digestutm_medium=email/#!overview
   Topic digest
  View all topics
 https://groups.google.com/forum/?utm_source=digestutm_medium=email#!forum/cmlhope/topics

-  ponatinib info #14bb0d02294a4d46_group_thread_0 - 5 Updates
-  Food that interacts with TKI's and other meds
#14bb0d02294a4d46_group_thread_1 - 2 Updates

   ponatinib info
 http://groups.google.com/group/cmlhope/t/5dfb95c0229110ae?utm_source=digestutm_medium=email
   Icandoallttc icandoall...@aol.com: Feb 21 10:18AM -0500

 Hi John
 Do you you remember how long the eye problem lasted! I have been having
 them a few times daily now thanks.


 Prayers  Blessings Jeanie [image: ][image: ][image: ][image: ][image:
 ][image: ][image: ][image: ][image: ][image: ][image: ][image:
 ]. 18,s

   John Barrons jlbca2...@yahoo.ca: Feb 21 03:55PM

 Hi I had them quite a long time go. Each aura lasted about 3 to 5
 minutes. They occurred very intermittingly.  Never found out why. I would
 like to ask what does 18,s mean?

 On Saturday, February 21, 2015 10:18 AM, 'Icandoallttc' via CMLHope 
 cmlhope@googlegroups.com wrote:


 Hi John Do you you remember how long the eye problem lasted!  I have been
 having them a few times daily now thanks.

 Prayers  Blessings Jeanie [image: ][image: ][image: ][image: ][image:
 ][image: ][image: ][image: ][image: ][image: ][image: ][image:
 ]. 18,s
 On Feb 19, 2015, at 3:16 PM, Icandoallttc icandoall...@aol.com wrote:



 Thanks John. That's what I having but with pain.  I have suffered with
 migraines most of my adult life but this is different.  I hope it's a side
 effect that will go away.  Looks like the media working --yahoo!

 Prayers  Blessings Jeanie [image: ][image: ][image: ][image: ][image:
 ][image: ][image: ][image: ][image: ][image: ][image: ][image:
 ]. 18,s
 On Feb 19, 2015, at 11:47 AM, 'John Barrons' via CMLHope 
 cmlhope@googlegroups.com wrote:


 I have a few auras which I understand they are migraine headaches without
 the pain. I had an MRI to see if there was a problem and there wasn't.
 Haven't them for a long time. No headaches or rashes. John b

 On Thursday, February 19, 2015 11:28 AM, 'Icandoallttc' via CMLHope 
 cmlhope@googlegroups.com wrote:


 Hi John and thanks for walking me through this new med.   Got a light
 rash.   Did you ever have an eye problem with headache?Thanks again.
 Prayers  Blessings Jeanie [image: ][image: ][image: ][image: ][image:
 ][image: ][image: ][image: ][image: ][image: ][image: ][image:
 ]. 18,s
 On Feb 19, 2015, at 11:01 AM, 'John Barrons' via CMLHope 
 cmlhope@googlegroups.com wrote:


 That's great your down to one pill a day. I am still on two a week. over
 the last to weeks my counts have stayed the same except for wbc up from 5
 to 7. John B

 On Thursday, February 19, 2015 10:33 AM, 'Icandoallttc' via CMLHope 
 cmlhope@googlegroups.com wrote:


 Thanks Marty. I will get some.  Thank heavens it doesn't itch. My blood
 counts were good today.   Platelets 152.  Doctor put me down to 1 pill
 daily of ponatinib.  Phosphatase is still high.  Going to be a guessing
 game till I get stable.  You are right--still here fighting.  Glad you
 finally got some relief.

 Prayers  Blessings Jeanie [image: ][image: ][image: ][image: ][image:
 ][image: ][image: ][image: ][image: ][image: ][image: ][image:
 ]. 18,s
 On Feb 18, 2015, at 7:43 PM, Marty Gartenberg wa2...@gmail.com wrote:


 Hi Jeanie and all of the rest,
 I really feel badly for you having to go through all of this, but on the
 bright side your all stil here to go through this.
 As far as the rash and not being able to put anything on it, well that
 really sucks. When will you be allowed to put something on your rash?
 When I had my total body radiation my skin was burnt, my fingers, toes,
 nose, ears feet, hands and other parts of my body were burned and looked
 like I was in a fire. I was told that while I was having the radiation
 treatments I could not put anything on any of these very severe burns, and
 I really suffered through it.
 As soon as my treatments were over they gave me Keri oil, then lotion.
 Both of them did very little to help me. Then a friend of mine told me
 about Bag Balm and I got it and started using it. Within two days my burns
 were still there because they were from the radiation poisoning but after
 putting that on it didn't hurt anymore. Everything healed up in less then a
 week.
 Then I had to start my 

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

['Icandoallttc' via CMLHope]

Thank you Maria.  I quit grapefruit juice when I first went on gleevec
Many years ago. I'm a Florida 
Cracker and was reared on them. 
I sure do miss them. The sickest
I got on gleevec was eating chili 
Which I loved. I learned to take
My pills with mild foods such as 
We have in breakfast. 
Good luck. 

Prayers  Blessings Jeanie . 18,s

 On Feb 22, 2015, at 7:28 AM, Maria Cashion mariacash...@gmail.com wrote:
 
 This is the link to the National CML Society directly to drug and food 
 interactions:  
 http://www.nationalcmlsociety.org/living-cml/drug-food-interactions
 
 LOVE YOU ALL!
 Maria
 
 On Sun, Feb 22, 2015 at 6:23 AM, cmlhope@googlegroups.com wrote:
 
 cmlhope@googlegroups.com Google Groups   
 Topic digest 
 View all topics
 ponatinib info - 5 Updates
 Food that interacts with TKI's and other meds - 2 Updates
 ponatinib info   
 Icandoallttc icandoall...@aol.com: Feb 21 10:18AM -0500 
 
 Hi John 
 Do you you remember how long the eye problem lasted! I have been having them 
 a few times daily now thanks. 
  
  
 Prayers  Blessings Jeanie 
 emoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.png.
  18,s
  
 John Barrons jlbca2...@yahoo.ca: Feb 21 03:55PM 
 
 Hi I had them quite a long time go. Each aura lasted about 3 to 5 minutes. 
 They occurred very intermittingly.  Never found out why. I would like to ask 
 what does 18,s mean?
  
 On Saturday, February 21, 2015 10:18 AM, 'Icandoallttc' via CMLHope 
 cmlhope@googlegroups.com wrote:
   
  
 Hi John Do you you remember how long the eye problem lasted!  I have been 
 having them a few times daily now thanks. 
  
 Prayers  Blessings Jeanie 
 emoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.png.
  18,s
 On Feb 19, 2015, at 3:16 PM, Icandoallttc icandoall...@aol.com wrote:
  
  
  
 Thanks John. That's what I having but with pain.  I have suffered with 
 migraines most of my adult life but this is different.  I hope it's a side 
 effect that will go away.  Looks like the media working --yahoo!
  
 Prayers  Blessings Jeanie 
 emoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.png.
  18,s
 On Feb 19, 2015, at 11:47 AM, 'John Barrons' via CMLHope 
 cmlhope@googlegroups.com wrote:
  
  
 I have a few auras which I understand they are migraine headaches without 
 the pain. I had an MRI to see if there was a problem and there wasn't. 
 Haven't them for a long time. No headaches or rashes. John b 
  
 On Thursday, February 19, 2015 11:28 AM, 'Icandoallttc' via CMLHope 
 cmlhope@googlegroups.com wrote:
 
  
 Hi John and thanks for walking me through this new med.   Got a light rash.  
  Did you ever have an eye problem with headache?Thanks again. 
 Prayers  Blessings Jeanie 
 emoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.png.
  18,s
 On Feb 19, 2015, at 11:01 AM, 'John Barrons' via CMLHope 
 cmlhope@googlegroups.com wrote:
  
  
 That's great your down to one pill a day. I am still on two a week. over the 
 last to weeks my counts have stayed the same except for wbc up from 5 to 7. 
 John B 
  
 On Thursday, February 19, 2015 10:33 AM, 'Icandoallttc' via CMLHope 
 cmlhope@googlegroups.com wrote:
 
  
 Thanks Marty. I will get some.  Thank heavens it doesn't itch. My blood 
 counts were good today.   Platelets 152.  Doctor put me down to 1 pill daily 
 of ponatinib.  Phosphatase is still high.  Going to be a guessing game till 
 I get stable.  You are right--still here fighting.  Glad you finally got 
 some relief.  
  
 Prayers  Blessings Jeanie 
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  18,s
 On Feb 18, 2015, at 7:43 PM, Marty Gartenberg wa2...@gmail.com wrote:
  
  
 Hi Jeanie and all of the rest,
 I really feel badly for you having to go through all of this, but on the 
 bright side your all stil here to go through this.
 As far as the rash and not being able to put anything on it, well that 
 really sucks. When will you be allowed to put something on your rash?
 When I had my total body radiation my skin was burnt, my fingers, toes, 
 nose, ears feet, hands and other parts of my body were burned and looked 
 like I was in a fire. I was told that while I was having the radiation 
 treatments I could not put anything on any of these very severe burns, and I 
 really suffered through it.
 As soon as my treatments were over they