Diagnosed with Ph+ B-ALL April 27th
Hi all! 42F (mother of 4 ages 19,17,14,11) diagnosed with B-ALL on the 27th after going to the ER for back pain the night before.
Started on Prednisone and did the first LP right away. I started Ponatanib 30mg on May 1st. I started a half dose of Blina May 4th and had mile side effects (fever, rash, body aches/pain). They bumped the dose a week later and side effects returned and became worse. It settled down after a few days but then my AST, ALR, and AP went through the roof. Blina and Ponatanib were paused and they started Dexamethasone. After a few days enzymes were down enough to restart Ponatanib at 15mg. I've had two doses but am starting to notice side effects like headache and loss of appetite.
More genetic tests came back during this, and I saw a new doctor, and now the prognosis isn't great. They are concerned I won't respond to treatment. I can post the exact things later but right now I'm too bummed out and overwhelmed. Still waiting on more genetic results.
The new doctor is wanting to wait four weeks to restart Blina, but that will push everything out. I'm anxious to get back on Blina but nervous about side effects coming back and my liver not tolerating it.
I'm not sure what I'm looking for in posting this. I would love to hear more stories and experiences with this regimen, especially side effects and what happened if issues arose.
I want to stick around as long as possible to raise my kids. Their dad is a bum and one doesn't see him at all. I've remained positive so far, but the disappointing genetic results and pause in treatment are really impacting me now. I'm still getting on the treadmill each day, eating healthy, working remote, visiting with friends each day, and trying to do anything I have control over to fight this, but I can't change my genes.