4 replies to this topic

[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 our help with this and best of luck to everyone!

-Ariana Reguzzoni

[Trey]

Duplicate posting.  See response:

http://community.lls.org/thread/18941

[arianareg]

Hi Trey,

Thanks so much for your kind words and response - I will be sure to pass this along to my mom.  We have an appointment with her oncologist coming up, so we're going to discuss other options.  He suggested blood transfusions, which might prove to be our only option, but do you happen to know anything about Procrit?  I'm thinking one series of injections (which she's had before) might help her gain back some strength and might not be a risk. (Her doctor discouraged Procrit because he said it might increase cancer cell production.)  I do think lowering the dosage of Gleevec, or possibly trying out another medication might be a good option too. Thank you for the suggestions! 

One other question - I have tried to get in touch with Dr. Mauro and Dr. Druker at Oregon Health Sciences University who ran the clinical trial my mom was in, but I haven't had any luck getting a response.  Do you happen to have any hints on how to get in touch with these doctors or others who are experts on Gleevec? My mom's oncologist is great in some ways, but not very open to "thinking outside of the box."  It was actually my mom who found out about the clinical trial in 2000 and brought it to his attention!

Thank you so much again for your help. This is a difficult time for my family, so any input you might have is very much appreciated.

Best,

Ariana

[Trey]

Dr Druker's contact info is on this list:

http://www.ohsu.edu/...D=9&Search=True

You or your Mom can also ask to talk to his nurse Carolyn Blasdel at the same number.

[arianareg]

Great, Trey - thank you!  I really appreciate your response and I wish you the best of luck with everything. So glad to be part of this discussion board!

Take care,

Ariana