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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.

alive | @alive | Jun 10 4:24am

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?

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1 reply
kt2013 | @kt2013 | Jun 10 5:39am

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.

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jamielynn777 | @jamielynn777 | Jun 10 9:26am
In reply to @alive "Sorry to hear about your diagnosis! That’s the mutations I had also when I was diagnosed..." + (show)
@alive

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?

Jump to this post

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.

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2 replies
Mentor
Lori, Volunteer Mentor | @loribmt | Jun 10 9:56am
In reply to @jamielynn777 "Thank you so much for sharing your story! So we don’t have the molecular report yet..." + (show)
@jamielynn777

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.

Jump to this post

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!!

REPLY
alive | @alive | Jun 10 11:40am
In reply to @jamielynn777 "Thank you so much for sharing your story! So we don’t have the molecular report yet..." + (show)
@jamielynn777

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.

Jump to this post

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! 🤪

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