Venting. Much of this has been said before from other CMLers. Reading is optional.
I was put on 50 mg Sprycel about two months ago and about three weeks ago started feeling better. Actually feeling like my old self: mowed the yard twice, washed cars back to back days and the second cleaned the interior of that car also, picked beans, made salsa and pizza sauce multiple times. Started catching up on housework. Coughing down, exercising and thinking weight is trying to come down, etc....
Today was my quarterly onc. appointment with BCR-ABL and lab results. So I asked about several lab abbreviations on the blood work. Turns out I'm anemic. Again. And onc. blames my fatigue on it but I just finished saying I'm feeling normal. Strange I'm anemic but yet feel so much better over what I've been feeling. Also temp up slightly but I had hat on and drove in with the the top off so I was in full sun. They used one of those forehead rolling ones. Maybe heat caused?
BCR-ABL on the way up. Six months ago was 0.0047 and MMR. Three months (after missing several doses due to cough, sinus, and generally feeling crappy and thinking it was plural effusion) up to 0.0302. Today's after two months on 50 mg Sprycel, still trending up 0.0528. MMR grey zone.
So, it's talk of switching to Gleevec at the highest dose. The only thing stopping was my script was up last week and results were in and whichever onc. they talked to said I could stay on 50 so I reordered and received today. Hoping my numbers will come down. I've been feeling so good, I've been skipping the vitamins. Hoping Vitamin D regularly will help.
Anyway, not really happy with my onc. Not feeling he really heard me today.
DX 1/14; Sprycel 100 Mg, liver toxicity; Sprycel 80 Mg; down to 50 Mg for 5 months. Numbers going up. Back to 80 Mg 10/16 (with 50s slipped in to use up) BCR/ABL: .0047 12/15; .0302 4/16; .0528 8/16; .084 10/16; .045, 1/17 back up on 80 mg Sprycel; .006, 3/17; .016, 7/17; Shingles 8/17