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May 2, 2024
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Answer Summary

Members responding to a question about CML treatment options with a p190 mutation shared their personal journeys with several different... Read more

Members responding to a question about CML treatment options with a p190 mutation shared their personal journeys with several different medications. Several members described trying Bosulif, Tasigna, Sprycel, and Scemblix with varying results, noting that side effects like fluid around the heart, severe nausea, and weight loss sometimes forced medication changes. A recurring theme was encouragement to stay hopeful, advocate for yourself with your oncologist, and consider specialty centers like Mayo Clinic, with one member noting how lucky patients are today compared to 20 years ago when a bone marrow transplant was the only option.

A MyLeukemiaTeam Member

I don’t know about the P190 mutation, But I know that Tasigna works for me now. I was on Sprycel for a short time, but I had to come off of it due to fluid collecting around my heart and lungs.

May 4, 2024
A MyLeukemiaTeam Member

Hang in thete

5 days ago
A MyLeukemiaTeam Member

I’m hopeful that my oncologist will be able to find a medication that works for my CMl . I know the p190 gene makes it more challenging but I try to stay positive. The fatigue is the hardest part and my arms ache constantly…

5 days ago
A MyLeukemiaTeam Member

I’m also dealing with hyperthyroidism and received radio active iodine today . Isolation for 2 days.

5 days ago
A MyLeukemiaTeam Member

I'm on Scemblix and doing well so far, only 2 months in.
I was ob Bosulif for 2 years and I couldn't keep food down, lost 80 lbs and almost died. No vomiting at all with the Scemblix. Some body pain, swollen lymph nodes, increased night sweats. I can deal with those side effects. Getting my first BCR test since starting Scemblix in December. Took a break between meds and it bumped me out of remission.
Everyone is different from every TKL, or so we're told.
I check on here pretty much every day, let me know if I can help. ❤️

5 days ago

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