Newly diagnosed with AML (FTL3 TKD)

Posted by jamielynn777 @jamielynn777, Jun 10 1:00am

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.

jamielynn777 | @jamielynn777 | Sep 28 11:54am

In reply to @loribmt "Hi Jamie. You’ve had a rough summer of chemo. My heart goes out to you because..." + (show)

@loribmt

Hi Jamie. You’ve had a rough summer of chemo. My heart goes out to you because I know the treatment for AML isn’t easy. I also had the FLT3 (along with several more) mutation and that’s the culprit which can make this leukemia so challenging to treat. I had FLT3-ITD which bumps it to the med-high risk for relapse. I don’t know if the risk level is decreased for FLT3-TKD.
However, what I do know is that my local hematologist-oncologists who treated me for AML and my Mayo Hemo/oncol were all agreement that having the FLT3 mutation pretty makes the patient an automatic bone marrow transplant candidate. It remains the only cure for AML.
The reason being, some of the FLT3 mutated cells can have the ability to elude or circumvent chemo. They can go dormant and ‘hide out’ during chemo only to re-emerge some time later and start the cycle again. It can be up to 18-22 months later.

Midostaurin is an abrogating drug which is targeted to the FLT3 mutation and is used in conjunction with standard chemo for AML. I was on that too. But from discussions with my doctors, the chemo and midostaurin only work for so long. Even repeated chemo, at some point, will no longer be able to suppress the FLT3 mutated cells. Basically, your old immune system no longer recognizes these cancer cells as the invader, which they’d normally ‘take out’. So cancer cells are able to proliferate out of control. Receiving an entirely new immune system from a donor, through a stem cell transplant, will allow those cells to be under the watchful eye of a healthy immune system again.

After 3 rounds of chemo, I was at 0 MRD and even at that, it was a rush to find a donor and have the transplant before there was any chance for a relapse. There was only 1 more round of chemo after that and it was the pre-conditioning right before transplant. No more chemo for AML.

That was over 5 years ago and now I’m super healthy and feel as though nothing ever happened. I was 65 at the time, so yup, I’m officially a ‘woman of age’ at 70. But I’m a far cry from my chronological age and feel like I’m in my 20s. ☺️

Where I’m going with this, if it’s determined to be in your best interest for a bone marrow transplant I’d encourage you to go forward. It’s the opportunity to beat AML and enjoy a second chance at life.
There’s a bunch of us in the forum who have gone through this process and we’re here for hand holding, life line, inspiration and encouragement. So please let me know what you find out with your next BMB on Oct 14th.

Jamie, the photo in your bio is just gorgeous. Is that you and your horse?

Jump to this post

Hi Lori nice to hear from you again! I really need your words of encouragement 🙏

The oncologist does say less risk with TKD but the cancer cells aren’t NIL either. I am also taking Midostaurin with each round of chemo to target the gene mutation. I would feel more comfortable knowing that I’ve done the stem cell transplant but the doctor doesn’t think I will need it unless the MRD rises significantly. I really hate this period of uncertainty!

Yes this is my horse named Aries! I’ve been so grateful to have ridden quite a few times throughout treatment! He did throw me off 3 weeks ago as he is full of energy and that was quite painful. Thankfully I’m now giving my body time to rest after this round!

Lori, Volunteer Mentor | @loribmt | Sep 28 12:34pm

In reply to @jamielynn777 "Hi Lori nice to hear from you again! I really need your words of encouragement 🙏..." + (show)

Hi Jamie, Aries is magnificent! I’m so happy you’ve been able to ride during treatment…except for being tossed off! Yikes. But riding just feels like a little normalcy after all you’ve gone through this summer.

Regarding transplant, from everything I’ve been told by my transplant team at Mayo, the ‘cleaner’ you go into your transplant, the better the chances of success. Your BMB will be telling and can help your doctor make good decisions along with you for future treatment. Would the transplant be done locally near you or would you have to travel to another clinic?

But for now, you have much needed time to recoupe after the last round of chemo. For me, it seemed to take longer to recover from each subsequent round of chemo. But the chemo was a life saver and so we do what’s needed to rid our bodies of those defective cells. Please keep me in the loop. I’m here for you any time. And give Arie’s velvet nose a little rub for me. ☺️

jamielynn777 | @jamielynn777 | Oct 26 10:36am

Just got my bmb results after the 4th cycle and the MRD shows .2%. I guess since I have a good mutation inversion 16 and the cancer hasn’t increased so a transplant isn’t required for now. I’m ecstatic that the cancer hasn’t increased and will continue with bmb every 3 months. Thanks for all of support and talking me through this tough time ♥️♥️

sonieaml | @sonieaml | Oct 27 9:58am

In reply to @jamielynn777 "Just got my bmb results after the 4th cycle and the MRD shows .2%. I guess..." + (show)

That is great news!

I too received results from my 3rd BMB and the results show me in REMISSION. No FLT-3 or NBPM-1 (NPMB-1) mutations were found. They do not know why my numbers are so slow to recover. Latest blood (Thursday) draw had my neutrophils at 0.1 and my platelets continue to drop week over week. Last treatment ended on Oct 15.
I will continue with weekly blood draws until my neutrophils get to 1.0 or above. At that time my chemo treatment will be 2 days Dacogen and 5 days Ventaclax. Formerly 3/7.
My question: why, if I am in remission and my numbers get back up to “normal” do I continue to be treated with chemotherapy? Help/explanation/insight appreciated. BTW I am 76 yo female and was diagnosed with AML on 3/30/24.

Lori, Volunteer Mentor | @loribmt | Oct 29 9:52am

In reply to @jamielynn777 "Just got my bmb results after the 4th cycle and the MRD shows .2%. I guess..." + (show)

Excellent news, @jamielynn777 and what a relief for you! I hope your energy is starting to rebound and that you can get on with life now. I think Aries ready for you to ride like the wind again. ☺️

Lori, Volunteer Mentor | @loribmt | Oct 29 10:04am

In reply to @sonieaml "That is great news! I too received results from my 3rd BMB and the results show..." + (show)

Hi @sonieaml, wow, that’s good news for you with your BMBX showing No FLT-3 or NBPM-1 mutations were found. That’s a huge relief being in remission!
The FLT3 mutation, in particular, is the tricky one and cells can remain ‘dormant’ or hiding out, essentially evading chemo. So your oncologist will be on the lookout for any trace of it returning for a certain period of time. They’ll continue to monitor you and make the decision on whether there is maintenance chemo or not. But reaching remission through your treatments is really encouraging. ☺️

Now you just need to get those slow poke blood numbers back up! You might see those numbers return faster now that your treatment is being reduced. Are you feeling ok? How’s your energy level?

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