Re:Can this be true?!

April 23, 2007

Congestive Heart Failure (CHF) due to Gleevec is very rare - reported at less

than 1% of people on Gleevec have developed it. My husband is one of the 1%.

He was on Gleevec for over 5 years when we heard the rumor that Gleevec can

effect the heart. His Oncologist ordered an Echo on his heart and my husband

put it off for weeks. When he went in for it, the hospital would not let him

leave as his heart was only working at 10-15% where a normal heart pumps at

50-60%. He was flown to Spokane the next day and had a defibulator pace maker

put in. He now takes 10 different medications to treat the CHF and none to

treat the CML. The doctors can not pin it on the Gleevec, but have found no

other risk factors to cause CHF in this 46 year old basically healthy if it

weren't for CML and CHF man. In looking back, would we have taken the risk if

we were starting treatment for his CML today? YES! My only wish is that it was

found sooner, so it could have been treated before he

heart was so weak. Right now his heart is too weak to treat the CML with

anything and at last check, was not getting any better. Be aware that Gleevec

can cause problems, look at all the other side effects Gleevec has, but most of

us decided it was worth it. There are also many drugs and other things that can

cause or contribute to CHF too. My recommendation is not to panic, but if you

are worried, get a base line (pain free test) and if you find yourself getting

more and more tired and winded by walking a short distance - then get

re-checked. Don't ignore it like we did for so many months thinking it was just

the side effect of the Gleevec. If caught early, I am sure both conditions can

be treated at the same time and severe CHF could be avoided.

All treatments for anything have risks and side effects. You and your doctor

just need to discuss the benefits vs side effects and find what is right for

you.

Ora

devoted wife of for 26 years

Dx 06/00 Gleevec 06/01

CHF 10/06 - no Gleevec since

CML is back, but not detectible from a normal CBC test

---------------------------------

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April 23, 2007

As I resumed scuba diving shortly after being in remission, 2 years

ago, and heart problems is an obvious contraindication to diving, I

have been insistent on this question with the various mds I saw. In

short they told me :

- It looks so far that the few people that got heart problems with

cml, with gleevec or other drugs, had previous heart conditions. They

referred to the nature article and other data but I have to admit I

don't recall the details.

- Fluid retention may also be an issue for people with pre-existing

heart conditions.

- As long as I feel well they see no special reason to stop diving,

just like every diver I have to stay in good enough shape to dive.

That was a MAJOR surprise after dx.

Marcos.

On 4/23/07, Ora <skittlepie2000@...> wrote:

>

> Congestive Heart Failure (CHF) due to Gleevec is very rare - reported at less

than 1% of people on Gleevec have developed it. My husband is one of the 1%. He

was on Gleevec for over 5 years when we heard the rumor that Gleevec can effect

the heart. His Oncologist ordered an Echo on his heart and my husband put it off

for weeks. When he went in for it, the hospital would not let him leave as his

heart was only working at 10-15% where a normal heart pumps at 50-60%. He was

flown to Spokane the next day and had a defibulator pace maker put in. He now

takes 10 different medications to treat the CHF and none to treat the CML. The

doctors can not pin it on the Gleevec, but have found no other risk factors to

cause CHF in this 46 year old basically healthy if it weren't for CML and CHF

man. In looking back, would we have taken the risk if we were starting treatment

for his CML today? YES! My only wish is that it was found sooner, so it could

have been treated before he

> heart was so weak. Right now his heart is too weak to treat the CML with