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.

Lori, Volunteer Mentor | @loribmt | Nov 22 9:21pm

In reply to @sonieaml "@loribmt Thank you for being here for us! Your first hand experience is invaluable. Maintenance for..." + (show)

@sonieaml I’ll keep fingers and toes crossed for a squeaky clean MRD result and equally ‘unremarkable’ BMB! I know how we kind of hold our breath until we hear the all clear. Let me know, ok?
And you’re right…we have to celebrate Thanksgiving daily! Each day is a gift, truly! Sending you a hug! 🥰

sonieaml | @sonieaml | Nov 23 12:34am

In reply to @loribmt "@sonieaml I’ll keep fingers and toes crossed for a squeaky clean MRD result and equally ‘unremarkable’..." + (show)

@loribmt Thank you!
We all know the longest days are the days waiting to learn the results of ANY medical test(s). My Hem/Onc has scheduled my follow-up appointment for 12/24 when we will discuss the complete picture from the MRD and the BMB.
I am optimistic and already wishing myself a Merry Christmas.

pixiesusan | @pixiesusan | Nov 23 8:32am

In reply to @sonieaml "@normahorn It isn’t Carolyn Kennedy. Please check again." + (show)

@sonieaml I believe she said it was Caroline Kennedy's daughter. Her name is Tatiana Schlossberg. Reading her story was very difficult, but she is a good writer.

bettersleep68 | @bettersleep68 | Nov 23 9:09am

Thank you for the information. I never knew lukemia could so extensive...my doctor told me to be more positive..going to repeat bone marrow biopsy in February..I guess it is a wait and see....thank you again ..have a very blessed Thanksgiving

sonieaml | @sonieaml | Nov 23 11:43am

In reply to @pixiesusan "@sonieaml I believe she said it was Caroline Kennedy's daughter. Her name is Tatiana Schlossberg. Reading..." + (show)

@pixiesusan thank you -initially I didn’t read “daughter” in the posting…I am blaming my double vision on missing that word;-)

1pearl | @1pearl | Nov 24 1:04am

In reply to @normahorn "Did you see that Carolyn Kennedy's daughter has been diagnosed with AML?" + (show)

@normahorn

Yes, I did.

hanya | @hanya | Nov 24 3:02pm

Hi Jamie ! I am so sad that at this young age you have to face this!! I have a different blood cancer , and I would encourage you to read as much medical information as you can find ! Mayo clinic is a great resource for cancer!
You found a good forum here where people with same experience and health issues, we share our honest thoughts about what endured!
May you be blessed with strength and good doctors who will take great care of you!
Hanya

Lori, Volunteer Mentor | @loribmt | 3 days ago

In reply to @sonieaml "@loribmt Thank you! We all know the longest days are the days waiting to learn the..." + (show)

@sonieaml
Thinking of you this morning and just wanted to check in with you to see how you did with the BMB yesterday. I know the results won’t be available for a while and you have your consult on the 24th! We want to see ‘unremarkable’ for all results. That will be the best Christmas gift. ☺️

sonieaml | @sonieaml | 3 days ago

In reply to @loribmt "@sonieaml Thinking of you this morning and just wanted to check in with you to see..." + (show)

@loribmt thank you so much! It went well however I have to say I have slept almost non stop since arriving home. They did take a bone biopsy as well. I do not recall the previous BMBs including a bone biopsy too. Do you know is that typical?
Consult has been moved up to 12/22. Will have results in 7-10 days…

Lori, Volunteer Mentor | @loribmt | 3 days ago

In reply to @sonieaml "@loribmt thank you so much! It went well however I have to say I have slept..." + (show)

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?

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