I haven't been here in a while, but things are going well.
Short review: DX 9/2010 but with only about 32K WBC (I was diagnose very very early), started on Sprycel 100 mg. I had an immediate and deep response, and had normal WBC in about a week. Undetectable/Indeterminate PCR in a couple of months.
After two years on Sprycel 100, the side effects were getting to me, so we switched me to Ponotinib 15mg, to see if it was the class of drugs (tki's) or the specific drug that was causing the side effects. That did not help. Still had the leg pain, fatigue and confusion, but now had a ton of new side effects that made daily life difficult. So after 6 months we moved to 50 mg Sprycel. Side effects much improved but still the pain cycles in and out, as does the fatigue with constant memory problems.
So depending on latest PCR results, which I will get on Tuesday, we are going to move forward and drop it to 20 mg.
Interesting discussing with my Onc. It is so odd to be here on the cutting edge of medicine. Two years ago there was only some vague discussion of reduction or stopping, if we could find a trial to get into. Now there has been enough information circulated, that it is becoming more apparent that if you have a strong and deep reduction quickly in your PCR, it is more likely that you will be a candidate for reducing or stopping.
What an interesting ride this is!
I hope everyone is doing well.