Been a while, I haven't had a computer in some time so for ease I haven't posted much unless I have to. I've been reading every day though.
I'd like to ask advice on how to convince your doc to lower your dose. I have a great doctor, both professionally and personally. He is not a CML specialist but he is an excellent hem-onc and he seems to keep up on CML pretty well, reads some studies like STIM trial, etc. PCRs are always conducted on time, no extra BMBs or wacky things that you see here with some of the others. Pretty by the book with up to date protocols.
That said, I would like to lower my dose but whenever I discuss it, he does not want to go that route because the trials are not conclusive or haven't yet been as promising as many docs would like.
I was originally on Tasigna and reached PCRU in seven months. I have been PCRU ever since, save for one or maybe two statistical blips -- I will be PCRU for 4 years in September. We switched to Sprycel 100mg a year ago because I had two episodes of a-fib, a lot of palpitations and other heart flutters, always felt my heart was working too hard, etc. Now that I'm on Sprycel, I basically have zero daily side effects, although sometimes I cramp or get sore.
Even though I'm side effect free, I would love to try 70mg for a while and see what will happen. I am under 30 and am on this medicine and also a beta blocker (which I also want to get off, because I think I needed it for Tasigna but not anymore with Sprycel). I just don't like the idea of so many drugs in my body at my age, and I don't want to get caught with a sudden PE or get dxed with PAH out of no where because I'm on a dose I don't need.
I'm not trying to get off completely, at least not for several more years. I would just like to see how low I can go.
Any suggestions on how to discuss this sort of thing?