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Relapsed AML: Anyone choosing no treatment?

Blood Cancers & Disorders | Last Active: Dec 14, 2023 | Replies (33)
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@kpurtill

I took Midostaurin when in the hospital and for a while it was fine, but rhen caused pulmonary hypertension which dropped my oxygen levels into the 80s, it was a little scary. They immediately took me off and luckily that eventually passed. Meds and their side effects, sheesh.
I bet Wisconsin is getting quite chilly! Even here in Atlanta it got down into the 40s overnight thus past weekend. Stay warm and please stay in touch!

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Replies to "I took Midostaurin when in the hospital and for a while it was fine, but rhen..."
Lori, Volunteer Mentor | @loribmt | Oct 18, 2023

Hi Kathy, thought I’d pop in to check in on you. ☺️
Coincidentally, I also took the abrogating drug, Midostaurin, between chemo rounds to target the FLT3 mutation. It’s interesting that it is the only one of the 3 mutations you had that hasn’t resurfaced! That’s pretty meaningful. To me it could be an indication that the Midostaurin worked well for its intended purpose!! Whoo whoo! That’s awesome. From my understanding that’s the mutation that is one of the worst offenders in our AML.

Just wanted to let you know I’m thinking of you and wishing you well along the way. ☺️ Lori.

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