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  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
> 
>
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>Updates
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>
> Not getting any mail
> 

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 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..

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 11/2009
>> 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