I came across one of @scuba posts regarding DROPPING sprycel dosage to 20mg. His reasoning is that sprycel can suppress the body's own immune system to combat cml. This made a lot of sense to me.
My history.
Around March/April of 2022, was my diagnosis.
Put on 400mg bosulif along with 300mg allopurinal.
Took the bosulif with my dinner, the theory being that I will sleep through any fatigue and nausea. The only persistent side effect was diarrhea that often left me unable to leave the house and exhausted. Took over the counter immodium based on hematologist instructions.
Around the time I started bosulif, I also adopted a whole food plant based diet for the most part. Other than the occasional sardines, I avoided animal products and dairy.
BCR-ABL trended in the right direction, reaching as low as 4%
However, October 2022 lab showed bcr-able at 80%! Mutation test was ordered and showed negative in the November lab. Curiously, the doc did NOT order a bcr-abl test for the November lab. Is this a red flag?
Last week, doc informed me I will put on sprycel. The initial dose is 100mg. This sounds VERY aggressive to me. Should he not have started me out at 50mg?
I read about the pleural effusion and this is very concerning to me. I'm scheduled to receive and start my sprycel this Friday 3/12/22 and will have been off the bosulif for 3 days.
All input from former and current sprycel users welcome. Thank you.