Chronic Myelogenous Leukemia (CML) Support Group
Chronic myelogenous leukemia affecst the balance of blood cells in the body, disrupting the normal balance. The cancer cells eventually begin to outnumber and push out the good cells, and could lead to anemia and easier bleeding/bruising. If you or a loved one is diagnosed with CML, this is the community to discuss your experience.
Are you able to get a second opinion?
Side effects don't necessarily relate to the level of drug in your body, it may just be that you are more sensitive to the drug. Tasigna and Sprycel are also available, though they all come with side effects to varying degrees, depending on the indiviudal.
My doctor is a very grumpy person. Every time I start complaining about Gleevec effects he dosen't seam to care because he says the effects are "minor". Well they are definatly not "minor" for me. I am tired the whole time and my eyes swell, my liver is not very happy either (its not suffering from toxicity tho).
I dont think my doc will acept that I want to do the test of imatinib levels and it is very hard for me to find another doc for a second opinion.
I dunno what to do... Thanks for the help anyway.
If you are responding well to Gleevec you may be able to do what I did, I achieved PCRU at around 16 months and after a year of PCRU my Gleevec dosage was reduced, with my doctor's approval, to 300 mg. I have continued to maintain PCRU.
I still get the fatigue, joint pain, fluid retention, skin issues, GI issues - but all to a lesser degree.
The other thing as I mentioned is switching to one of the other TKIs. The majority of people on other forums seem to find their side effects are reduced.
Another forum I found which was/is extremely helpful to me is http://community.lls.org/community/bloodcancer/livingwith/cml/content?filterID=content~objecttype~objecttype[thread]
The LLS CML forum is a lot more active than this one.