Newly diagnosed with AML (FTL3 TKD)

Sorry to hear about your diagnosis! That’s the mutations I had also when I was diagnosed with AML over 8 years ago. I had 7+3 induction twice to put me into remission. I then had several chemo consolidations while I was waiting to find a stem cell transplant donor. My doctor said my mutations were aggressive and would require a transplant. I had a successful transplant 4,5 months after my diagnosis.

What are your doctors recommending? How are you feeling now?

Good morning, Jamie. I am so sorry to hear of your diagnosis, it is certainly overwhelming. But knowledge is power, so welcome to the Mayo internet support group!
I was diagnosed with a FLT3, aggressive AML in 2013 and next week, on June 20th, I will celebrate my 11th anniversary of my stem cell transplant. I too had consolation chemotherapy, followed by high dose chemo and transplant. I remain in remission and have a wonderful, active, and blessed life.
Please know we will keep you in thought and prayer as you travel this road.

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.

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!!

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! 🤪

Hello Jamie
I see you were recently dx with aml. I, myself do not have it but my younger sister was just dx on June 1st. She went to her dr for a routine rx refill and due to thyroid issues she was told to get a blood test. Since her and I were leaving on vacation in a week, she went right to the lab. She had extremely high wbc count. 104,000. So her doctor told her to go to the hospital. She is still in the hospital and went through multiple chemo TX and transfusions. It's been almost 1 month of chemo and now we are waiting on her bmb results. I want to tell you to stay positive and let them do the work that needs done. Happy thoughts and only happy people need to visit. I wish you the best of luck. There are multiple new meds and trials out there.

Hi Jamie,
I was diagnosed with AML last year with 5 different mutations. I went through a couple rounds of chemo and then a BMT in September. I’m in full remission and doing great. Keep the faith and the best advice I can give you is to stay off the internet. I, also, did a lot of reading on the internet and it took me to a place of depression. Listen to your doctors and keep fighting.

@whisperingwinds, it sounds like you and your sister are very close. How is she doing? How are you doing?

Just wanted to give an update as I’ve just completed my 4th round of chemo on 26th Sep.

From Jul 31 to Sep 18 my MRD has gone from .1% to .3%. I have another bmb scheduled for 14th Oct and only after this will I know if a stem cell transplant is required.

My question is it possible to maintain low MRD without a relapse? Doctors have said that i would need a transplant if the MRD gets closer to 1%.

I’m feeling scared about the uncertainty of a relapse and having to do more rounds of chemo.

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?