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Sprycel/Jakafi/living with CML
I was diagnosed with CML (chronic myelogenous leukemia) in March 2021. Although I have been taking Sprycel since being diagnosed, my BCR-ABL numbers have plateaued at .03%. My target goal was supposed to be at or below .01% after the first year of treatment. My oncologist is considering getting me into a Jakafi trial as a treatment to be used with Sprycel. Has anyone else done this treatment and how did it go? I’m nervous about getting on another medicine and feeling like crap again. It took almost a year to fully adjust to the Sprycel.
Thanks for any input!
Jake
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I have been on Jakafi since late August. I had GVHD after a bone marrow transplant in 2020 for AML. Jakafi can be used to treat and prevent GVHD. I started at 5 mg/day for a month without any side effects, so my doctor increased the dosage to 10 mg/day. A week later, I started having pain in my hamstring muscles and tops of my feet, which made it painful to walk. After decreasing the dosage back to 5mg/day, the pain has subsided. I’m convinced the Jakafi was the cause of this pain.
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2 Reactions@chrondor (Jake), I'd like to add my welcome along with @edb1123. I'm also tagging fellow CML-ers like @babyjakejake @ericloomis @living @anglis @craighatescancer and @suzie71 to join this discussion.
I can understand your apprehension about adding Jakafi (ruxolitinib) to Sprycel (dasatinib) if it took a while to adjust to Sprycel alone. Hopefully, since you'll be continuing with Sprycel, the addition won't be a big an adjustment.
Browsing Mayo Clinic's clinical trial database, it looks like there are a number of trials underway testing targeted therapies for CML.
https://www.mayo.edu/research/clinical-trials/diseases-conditions/chronic-myelogenous-leukemia/
What side effects are you dealing with at the moment, Jake?
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