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

Shoe drop

Well I always wonder when the other shoe will drop. Well today one of the shoes dropped. I am not sure if it is "the other shoe" but it is a shoe. I called my cardiologist to see if my test results came back in, they did.

Let me back track a little, in January my cardiologist found I have a 75% blockage of my left subclavian artery ( artery near my clavicle that feeds my left arm) this seems to be the reason for the low blood pressure in my left arm. I have high blood pressure in the rest of me. I have been on 3 different blood pressure meds. to try and regulate my pressure. The first two I ended up getting a rash from them so I had to be switched. I also have borderline high cholesterol so I am no on meds for that as well. Well I had an MRA which basically an MRI that checks your blood veins and arteries.  My cardiologist was looking for some sort of blockage going to my kidneys. Well sure enough there is. I have 73% blockage of my right renal artery and some blockage of my left renal artery as well.

I have an appointment with my oncologist tomorrow and I am sure we are going to discuss these new problems. I have a feeling he is going to think these heart related problems are related to my meds. If so I see another change in CML meds coming soon. I have already been on 3 of the CML meds and there are only 2 more that are FDA approved. None of them are perfect and all have their own side effects and concerns that come with them. At this point CML wise things have been going quite well. I don't like change so I guess all I can do is wait and see what is going to happen.
TO BE CONTINUED: