Really second guessing myself and hoping I haven't made a big mistake. Saw Dr this morning and had another blood draw for PCR. Last two PCR (over 2 months) have increased from undetectable, increase hasn't been huge, (.036% and .046%) but those numbers are not IS so hard to tell what they mean. Basically they said the first result was around -4 log IS and the second one was closer to -3 log IS, which if accurate means I had a 1 log increase over 4 weeks. We are sending blood to another lab that is IS to get an accurate idea of where I am. I got the sense Dr was not thrilled with the results so far. I asked what if it goes up more and he said we should wait to see what results are but basically he would want to do a BMB and see if anything has changed with the disease. He says it is not common but it does happen where people are doing fine and then suddenly they are not doing fine. I asked if it was result of low dosage (50mg) Sprycel. He said it's possible that it is just not enough drug and things are creeping up, but it seemed like he didn't really think that was the case. I think he thought like I did, that 50mg should have worked well enough on me. He said in cases where the disease mutates, it wouldn't be because we lowered the dose he's saying the lower dose may cause it to show up sooner.
I can't help but think I got myself into trouble here. I was doing fine on Gleevec, I was CMR and I probably should have left well enough alone. I felt like crap but my disease was under control. Now I pushed my luck and switched to Sprycel and when I started having trouble with Sprycel I pushed to lower dosage thinking it would be fine. Now my numbers are going up. I can't help but think if I had just stayed on Gleevec I wouldn't be in this situation now. Granted I had trouble even getting out of bed, but now I wonder if I should have just sucked it up.
Now I wait to see how bad this is and where this is going. Best case I am still MMR and I increase Sprycel and get it back under control, and try to tolerate the side effects. Worst case....I don't even want to think about, but can't help it. I really thought I was passed this part and now I am feeling really naive.
I was lucky enough to have this under control and I had to start playing around to try and feel like a "healthy person". Wake up call, I'm not healthy......