Part 2

Well, hmmmm,
I had my appointment with Dr Talpaz. What he decided to do is take me off all CML medications and see if I can remain cancer free. Since I now have high blood pressure and 2 blockages of approximately 75% he is positive the blockages are related to Tasigna. So no more for me EVER.

There are a lot of people in the CML world who would be ecstatic to be off their meds, however I am not one of those. The meds I have been on, even though they come with side effects they have managed to kick CML's butt and put me into a molecular response for almost 4 years now. Dr Talpaz's theory is in studies that are out there 40% of people who come off Gleevec remain CML free. The other 60% once back on TKI's get to a cytogenetic  response. Since Tasigna is much more potent then Gleevec he feels that the 40% number will be greatly increased with Tasigna patients coming off the drug.

I am not sure  what it would be like to be off meds and live a "normal life". However for me it will never be "normal" as I still will have to have a pcr done every 3 months for now. Maybe in the future it will be moved to 6 months but I am not sure. In the back of my head I will always be waiting to see when the pesky little f'n leukemia cells sneak back in and start working again. If they do what then??? There are 2 FDA approved drugs that I haven't been on already. Bousilif sounds like the one that I would be put on if I should relapse. Of course it is new and there isn't any long term studies on how that one works and how people tolerate it. There are just so many unknowns, I don't do well with change so I will have to see how this all works out.
Thanks for stopping by,
Chuck