Larry: I have been taking Gleevec since dx'ed January 2004......will be nine years next month. I was put on 400 mgs. and didn't receive the "non detectable" status until July 2010 & it has remained that ever since. My doctor did not make this decision on her own to change my dosage of Gleevec, I asked her myself if it would be alright to cut it in half and see how I do. She agreed. I talked to her about how I had heard of some going completely off of any drugs and that I did not feel comfortable doing that. She said she didn't feel comfortable with it, either. That out of the Gleevec studies that have been going on, the study group where those went off of Gleevec completely, almost half had their CML return within the first year.
The reason I wanted to go from 400 to 200, my bone, joint, & muscle pain has been very bad. I'm hoping the lower dosage will lessen the side effects somewhat. Larry, I was told right up front from day 1 of Gleevec, that it* could *start failing at any time. Doesn't matter if you are on 800, 600, 400, or whatever mgs.. And, if you are reading in this group the posts from past have many where after many years on Gleevec, it began to fail and people started losing their "non detectable" status, some after 10 years. We are all at that risk. And, my doctor and I decided right up front, if there were any changes in the BCR-ABL that I would go back to the higher dosage. I don't fear it coming back as I once did......there are too many new drugs out on the market for us with CML today than when you & I were dx'ed. And, you were wondering how I'm feeling on the 200mgs. Well, I feel great! God bless, Suzieq -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope
