Newly diagnosed with AML (FTL3 TKD)

Posted by jamielynn777 @jamielynn777, Jun 10, 2024

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.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Profile picture for Lori, Volunteer Mentor @loribmt

Hi, @sonieaml Happy to hear it all went well…I’m usually zonked out the next day too if that’s any consolation. Enjoy the nap guilt free. ☺️

There are normally 2 parts to a bone marrow biopsy. They can be done separately or I guess only one or the other, but most often done together as a BMBX. (Bone marrow biopsy and aspiration exam)
There’s the bone marrow aspiration which takes samples of the liquid portion of the marrow and a bone marrow biopsy which is a core sample of the spongy tissue inside your bigger bones, like the hip, that produces red blood cells, white blood cells, and platelets. But you’re posing a new one for me with the bone biopsy. With my experience of having 13 BMBX I never remember seeing actual bone as part of the testing, just marrow and aspirate. I’d like to know more! So if you learn the reason behind that test, please fill me in!
Now the long wait between testing and results. Distraction!! ☺️ What keeps you busy during the day?

Jump to this post

@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.

REPLY
Profile picture for Lori, Volunteer Mentor @loribmt

Hi, @sonieaml Happy to hear it all went well…I’m usually zonked out the next day too if that’s any consolation. Enjoy the nap guilt free. ☺️

There are normally 2 parts to a bone marrow biopsy. They can be done separately or I guess only one or the other, but most often done together as a BMBX. (Bone marrow biopsy and aspiration exam)
There’s the bone marrow aspiration which takes samples of the liquid portion of the marrow and a bone marrow biopsy which is a core sample of the spongy tissue inside your bigger bones, like the hip, that produces red blood cells, white blood cells, and platelets. But you’re posing a new one for me with the bone biopsy. With my experience of having 13 BMBX I never remember seeing actual bone as part of the testing, just marrow and aspirate. I’d like to know more! So if you learn the reason behind that test, please fill me in!
Now the long wait between testing and results. Distraction!! ☺️ What keeps you busy during the day?

Jump to this post

@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.

REPLY
Profile picture for g4c @g4c

@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.

Jump to this post

@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?

REPLY
Profile picture for sonieaml @sonieaml

@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?

Jump to this post

@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.

REPLY
Profile picture for Lori, Volunteer Mentor @loribmt

@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.

Jump to this post

@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 ;-}

REPLY
Profile picture for sonieaml @sonieaml

@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 ;-}

Jump to this post

@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!

REPLY
Profile picture for Lori, Volunteer Mentor @loribmt

@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!

Jump to this post

@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.

REPLY
Profile picture for sonieaml @sonieaml

@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.

Jump to this post

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.

REPLY
Please sign in or register to post a reply.