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[arianareg]

Hello,

I've signed up with LLS on behalf of my mom, who was very active in this community when she was first diagnosed with CML twelve years ago.  She was in the first clinical trial for Gleevec in 2000 and has been on it ever since.  It's been very helpful with keeping her CML under control (although she just reached 0% philadelphia chromosome a couple of months ago for the first time), but, unfortunately, she's been dealing with some other, perhaps more challenging, side effects in the past couple of years.  The primary challenge is anemia.  If she is at 8.0 (hemoglobin count), that is high for her.  Additionally, she just had her second heart valve replacement surgery. The first was open heart surgery in 2010, to replace her aortic heart valve and the second was a less invasive procedure to replace her mitral valve this past October.  Right now she's having a very hard time with recovery, mainly because her hemoglobin count does not stay high enough. The only treatment her oncologist has recommended for are blood transfusions, but she's needed them almost every two weeks - it just does not seem like a realistic option for the rest of her life.  (I should mention, she's 76 years old now.) 

I would so greatly appreciate it if anyone could weigh in  - who has been on Gleevec  or any other medication - about how to treat anemia? Also, I've been reading that Gleevec, and some other medications for CML, have been linked to heart disease (i.e. congestive heart failure). Does anyone else have any input on this? The doctor never mentioned this to us and is now saying my mom's heart disease is unrelated to Gleevec, but she has always been very healthy, before the CML, and none of the other causes of heart disease seem to apply to her.  If you have any thoughts, experience or people to recommend to talk to about the following, my family would be very grateful:

- How can you treat drug-induced anemia?

- Should we consider switching to another medication (Bosutinib or Sprycel?) that might have less risks of anemia/ heart disease than Gleevec?

- Has anyone else suffered from heart disease or anemia and think that it might be a side effect of CML medications?

Thank you so much for your help with this and best of luck to everyone!

-Ariana Reguzzoni

[Trey]

Ariana,

Your Mom is a pioneer, and we all have great respect for  her and others who helped bring these drugs to the rest of us.  These drugs have saved our lives.

Your questions are not easy to answer.  But first, the long term anemia issue can be difficult to handle.  Most of us have some level of anemia, but recover from it over time.  But that has not been your Mom's experience.  So it is unlikely that she would recover while on the current Gleevec dosage.  So a change to another drug could bring an improvement, but there is also the possibility that it may not.  Given her situation, it could be possible to reduce the Gleevec dosage to 300mg to see what happens.  If that does not help, then a switch to another drug might be a good option, maybe at a lower dosage than normal.

The heart damage issue is even harder to sort out.  Initial concerns about heart damage were later dismissed as inconclusive.  But some level of concern remains, especially for older patients.  I don't think there is a clear answer to your question about possible heart damage over the longer term for older patients.  I think that only time will tell the story.  I would say that it is possibly related, but inconclusive. 

 

Tell your Mom thanks from all of us.  Let us know if we can help further.