10 replies to this topic

[TNKSCHAEFER]

Good evening everyone,

 

New to this site but very familiar with CML, my husband, Tom was diagnosed with CML in August, 2002, and has been on 800mg of Gleevec ever since.  He has managed through with all of the side effects and still maintains an undetectable level of CML.  Recently he has had a lot of trouble with stomach acid and heartburn which keeps him up all night.  He has had an endoscopy which revealed he has numerous polyps in his stomach.  Several were removed and the other biopsies revealed precancerous tumors; he has an appointment in a few weeks to discuss further treatment options.  I was just wondering if anyone else has experienced similar issues.  The doctor said he doesn't believe this is CML related, which might be true, but I'm sure 13 years of Gleevec has something to do with it.  Your thoughts are appreciated.

 

Karen

[Billie Murawski]

Hi Karen, Before cml I had acid reflux that damaged my esophagis and there were some pre-cancerous cells in my throat. I was put on 80mg of Nexium right away and it healed my throat thank God. A couple years later I was dx with cml and put on Gleevac, it was pure hell sometimes it felt like a hot poker in my throat and I was sick all the time, I had my routine endoscopys and they were fine.

 After 3 years my Onc finally put me on Sprycel and my problems disappeared in no time. I still take Protonix for my reflux,80mg a day and I have been undetectable for 5 years now. Maybe a change in meds and Nexium will help him It sounds like his onc is not up to date with these tkis. It wouldn't hurt to call his doc and see if it's okay for him to take nexium. Good Luck    Billie

[Trey]

Gleevec is primarily taken up through the stomach and duodenum.  It is not known to be overly harsh on the stomach, but we are all different, and it could be a contributing factor for him.

 

Does he take Gleevec with a meal?  If not, he should.  If he takes it late in the day, he should move it to early due to stomach issues at night.

 

Don't let him eat after dinner.  And eat dinner early.  6PM at latest. 

[Sneezy12]

Why is he still on 800 mg. of Gleevec daily? Regards, Frank

[soundoff]

Good catch Sneezy....
800 MG is double the does of Gleevec typically needed. Especially since he is PCRU I would think a dose reduction is in order.

[Billie Murawski]

WoW 800mg since 2002 no wonder his stomache is so messed up it sounds like another opinion is in order most of us do get second and third opinions so don't be shy.    

[R0f03l]

Eu estou atravessando os problemas menores que estou a seguir para aprender mais.

 

Meu médico me mandou tomar a gleevec após uma grande refeição tomar o medicamento com um grande água of vidro.

 

 

Eu acredito que este problema se deve ao remédio de estômago sim! O médico não recomendou sim um protetor gástrico

 

abraço

[acl]

 

Eu estou atravessando os problemas menores que estou a seguir para aprender mais.

 

Meu médico me mandou tomar a gleevec após uma grande refeição tomar o medicamento com um grande água of vidro.

 

 

Eu acredito que este problema se deve ao remédio de estômago sim! O médico não recomendou sim um protetor gástrico

 

abraço

 

Ola R0F031, Eu gosto de tomar o meu Imatinib (Gleevec) depois de comer uma sanduiche com um copo de agua. se eu tomar com sopa e bolacha eu tenho hemorragia na vista. Rapidas melhoras..

acl

[R0f03l]

Ola R0F031, Eu gosto de tomar o meu Imatinib (Gleevec) depois de comer uma sanduiche com um copo de agua. se eu tomar com sopa e bolacha eu tenho hemorragia na vista. Rapidas melhoras..

acl

 

The gastro doctor never recommended you a gastric protector?

I next week I go to the gastro dicutir it is necessary to do an endoscopy to vr and gleevec this attacking the stomach.

 

Have you tried taking Gleevec night with a full glass of water and about 400 ml or more?

 

hug and improvements

[acl]

 

The gastro doctor never recommended you a gastric protector?

I next week I go to the gastro dicutir it is necessary to do an endoscopy to vr and gleevec this attacking the stomach.

 

Have you tried taking Gleevec night with a full glass of water and about 400 ml or more?

 

hug and improvements

 

Hi R0f031, The doctor never prescribed anything for my stomach, I remember that when I ate meat it felt like a rock in my stomach, but it's much better now. I only take the medication that's absolutely necessary. I had joint and bone pain and I never took anything, I used a heating pad. I take approximately 650 mg. Magnesium Bisglycinate daily. If I don't take it I have  really bad muscle pain, especially in the calf muscle. Make sure you are well hydrated drink lots of bottled water it helps. You will feel much better when your PCR% decreases, I feel better my PCR in August was 0.22% International scale, what is yours? I was blessed the day that I found this forum, the people are very kind, very knowledgeable and very helpful and funny! I have always said that I wish Trey was my doctor. Tonight I will remember you in my prayers. You take good care of yourself.

 

Hug

acl

[R0f03l]

Hi R0f031, The doctor never prescribed anything for my stomach, I remember that when I ate meat it felt like a rock in my stomach, but it's much better now. I only take the medication that's absolutely necessary. I had joint and bone pain and I never took anything, I used a heating pad. I take approximately 650 mg. Magnesium Bisglycinate daily. If I don't take it I have  really bad muscle pain, especially in the calf muscle. Make sure you are well hydrated drink lots of bottled water it helps. You will feel much better when your PCR% decreases, I feel better my PCR in August was 0.22% International scale, what is yours? I was blessed the day that I found this forum, the people are very kind, very knowledgeable and very helpful and funny! I have always said that I wish Trey was my doctor. Tonight I will remember you in my prayers. You take good care of yourself.

 

Hug

acl

 

I talked about the gastric protective as it helps the stomach to protect against too much medication. But it feels better that way then okay! Beware protein eceso it disrupts the bad.

 

Regarding the water I drank little but now I'm drinking more. I felt muscle pain at the beginning of treatment more now I felt almost nothing.

 

I just got my PCR three months of treatment is 0.45% but I currently have 9 months of treatment at the international level.

But acl how long treatment is that this PCR?

 

Thank you for remembering me in your prayers, and also remember you in my prayers. Believe in God I saw everything go right.

 

Hugs, I am available to Quaker thing I could help.