Newly diagnosed with AML (FTL3 TKD)
Hi I’m Jamie, 39 and I was diagnosed on 5/26/24 with AML mutation FTL3 TKD.
I live in Dubai and can’t really find a lot of information or stories of others with a similar diagnosis to mine. We are still waiting for the BMB to come back as it is sent to the Mayo Clinic with a turnaround of 2 weeks. The general plan is to complete 7/4 and so far I have completed 1 cycle and will start Midostaurin tablets for 14 days soon. If anyone has the same diagnosis, can you please share anything helpful as I’m feeling very scared at the moment.
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@loribmt Thank you for sharing your experience with BMB and not knowing about taking bone as part of the procedure. She had a tech in the room who looked at the specimens REAL TIME as she drew the fluid and the marrow to insure they got good samples. 3 vials of marrow I believe I heard her say. The initial bone sample was periodic so she had to find a more substantial sample. I have osteoporosis which has gotten worse over the years. My Hem/Onc doesn’t feel that AML plays into it but the Endo MD does. Go figure.
Will message my Hem/Onc and ask about why a bone sample was included in the BMB. Will send an update when he replies.
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2 Reactions@loribmt
Well you had me thinking about this. I lost track of how many biopsies I’ve had, always the hip from the back first an aspirate with a needle then a core sample in the Illiac crest to remove a core sample of marrow plus a small piece of bone. I had only lidocaine injection so I always knew when they applied pressure to “drill” out that core.
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1 Reaction@loribmt So you have had them remove bone during the BMB procedure? Thanks for letting me know. I did message my Hem/Onc about it. In the meantime you asked what I do during the day. I drive cars 2 days a week at the auto auction…the rest of the time I am making ODAAT bracelets (One Day at A-Time) and earrings to give to the patients at my MD’s waiting room and the infusion center. How do you keep busy?
@sonieaml, I think part of your reply might have been addressed to @g4c but I, personally, don’t recall having bone removed during the BMB. Other than a tiny amount of outer bone removed via drilling or puncture to get at the marrow and the peripheral fluid. But to my knowledge the bone fragment wasn’t sampled itself. It’s like drilling into a coconut to get at the juice and meaty portion. The outer shell had to be drilled or punctured to get inside so a tiny piece of that outer shell was compromised.
But with your osteoporosis, maybe the doctor wanted a sample of the outer bone? That’s what is a first for me. So I was curious.
Intersting side hustle you have of driving cars at an auto auction…what does this all entail? Aw, you’re a person after my own heart! I love making and giving motivational gifts to patents at the chemo center and hospital. Your ODAAT brackets and earrings are so thoughtful and, I know from experience, they’re well received! Thank you for doing that! As a patient yourself, you know how even the tiniest nudge can flip someone’s day around for the better!
Hm, how do I keep busy…well, several hours a day are spent right here with you and others mentoring for Connect. I walk on average of 6 miles daily, read, usually do some form of arty stuff in the afternoons like painting. My favorite activity besides watercolor is making cute little journals that I hand out at infusion centers, hospitals when visiting, to patients I mentor locally. They’re small so people can tuck into a pocket to keep notes, write snippets of inspiration, that type of thing. I don’t have the discipline to actually write in a journal but I love making them. Lately I’ve started making tiny origami boxes with teeny duck inside, with an inspirational quote. Anyway, I keep busy enough to ‘mostly’ stay out of trouble!! 😂
Here’s a pic of the little boxes and duckies. I don’t have the cover decoration or card inclosed yet. They’re only 1.5 inches max.
@loribmt started work today at 7am so not surprised I replied to the wrong poster! Apologies
all around 😉
Driving at the auction involves driving cars while the dealers bid on them (on Wednesdays)…Sunday’s are spent getting the cars ready for Wednesday. I feel like they pay me to exercise with all the walking we get in!
Your journals and boxes with little ducks are adorable and very creative…so glad you share them too. Lunch is over so back to work. Love and prayers to all ;-}
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1 Reaction@sonieaml Kudos to you!! You’re at work by 7 AM? You certainly get your exercise in with all the walking and your job sounds pretty interesting. I’m impressed with the early hour that you’re out the door. I’m a consummate early riser but these days, I’m hard pressed to be presentable for human viewing before 7. 😁 Hugs!
@loribmt I am a morning person so 7am is a grest start time. Keeping me up after it gets dark is a challenge. I think. I run on solar energy 😉
UPDATE:
Heard back from my Hem/Onc that the bone taken during the BMB is protocol standard. Was new to me because the technician mentioned it; the previous other 2 did not.
Hi @sonieaml
Thanks for the update. Huh, I’ve never heard of taking a bone sample either so that’s news to me too. I’ll try to find out more… inquiring minds want to know! LOL.