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Newly diagnosed with AML (FTL3 TKD)
Blood Cancers & Disorders | Last Active: Oct 29 10:04am | Replies (16)Comment receiving replies
Thank you so much for sharing your story!
So we don’t have the molecular report yet which helps to determine the prognosis and treatment plan. Should come this week though. I only know that I have completed 7 days of cytarabine and daunorubicin. Now I’m starting Midostaurin tablets targeted for FTL3 for 14 days. After 2 weeks they will retest the bone marrow.
Overall I feel fine and but I did pick up a Norovirus while being in the hospital. My counts are still really low and starting the new chemo isn’t really going to increase them either.
I’m just worried that chemotherapy will be too hard on my organs after seeing way too many TikTok videos on AML.
Replies to "Thank you so much for sharing your story! So we don’t have the molecular report yet..."
I agree with Lori! Internet searches will pull up all the worst case scenarios and weird cases. I was 50 when I started chemo. It was rough going, but I am in full remission with all my organs in tact! 🤪
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Hi Jamie, I had the same FLT3 mutation with another couple tossed in just for excitement! LOL. Same regimen with 7/3 and Midostaurin. That’s the abrogating drug targeted to the FLT3 mutation. I was 65 years old at the time of diagnosis and now just days away from my 5th CELLebration of a bone marrow transplant, in full remission and feeling fabulous!
My biggest advice to you right now is to stop looking on the internet, especially TikTok for information on AML. That’s rabbit hole warren you don’t want to be dragged through at a time like this! Sure, chemo can be rough but it is your only option right now to get this AML under control. So ignore all the nay-sayers. Trust your oncology team…they already get two thumbs up in my view for sending the biopsy off to Mayo Clinic! ☺️
Depending on your cytogenic report, there may be a suggestion of a bone marrow transplant to put you into a full remission.
There are quite a few of us in the forum who have gone down this same road and we’re here to help you in any way we can. Keep us posted!
Not fun having the norovirus on top of chemo…hope you feel better from that little bug soon…just in time for round two, huh. 😉
By the way, what a gorgeous photo of you and your beautiful horse!!