Newly diagnosed with AML (FTL3 TKD)

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!

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. ☺️

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 ♥️♥️

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.

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. ☺️

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?

Thank you! My treatment has been reduced to 2/5 (Dacogen and Ventclexta (sp)).
Numbers coming up a little quicker. Next round will be 2/3 starting 15 Jan 25!
My energy is pretty good and I am happy to report I am working again. Just 4-11 hours a week but it gets me out of the house and active (driving cars at my local auto auction)! I feel blessed and grateful that my “new normal” life living with AML is so incredible!

@sonieaml, This is just such special news. Being able to go back to work, even part time, gives that all important sense of normalcy! I’m so happy for you and also @lindagi who shared her similar news that Dacogen and Ventclexta has been doing wonders for her too!
Knowing the toll AML can take on us, mentally, physically and emotionally, I wish we could do a group hug…what a way to begin a new year!

My AML has relapsed in the last 3-4 weeks and I found out yesterday as I got Covid. 😪 I never did the bmt so now the plan is to get chemo injections plus tablets for 8 weeks to put me back in remission and then do a bmt. It’s like I’m starting all over again I wish the doctor did the bmt the 1st time. After the bmt I understand that a lot of people relapse with Ftl3. I’d give anything to have a healthy life again.

@jamielynn777. Sigh…well, this certainly isn’t the news you wanted to hear. I’m so sorry you’ve had a relapse after all the treatments you’ve gone through. AML, with that pesky FLT3 mutation can be such a challenge. It’s one of the mutations where a few cells can elude chemo; Basically going ‘dormant’ and hiding out for months, only to resurface later. It becomes problematic because that mutation can also circumvent the immune system’s ablity to spot the cancer cells and snuff them out. That’s where the bone marrow transplant becomes so important. By replacing your defective immune system with that of a donor, the goal would be that the new immune system would again recognize the cancer cells. It’s usually prudent for a transplant to be done with the first remission.

But the good news is the relapse was discovered early so treatment can begin right away. This time, there is no hesitation to go ahead with the transplant when you reach remission! It remains the only potential cure for AML at this time so it is definitely worth pursuing. While nothing is 100%, bone marrow transplantation has been really showing promise to those of us with the FLT3 mutation. I’m just coming up on my 6th year cancer free after the same diagnosis.
Life for most of us returns to ‘near’ normal post-transplantation after about a year of recovery. The first couple months are the most challenging. But after that it’s an incremental period of gaining strength, stamina and resuming normal life styles. It just takes time! But you’ve already been through similar with the rounds of chemo so this will be more of the same for a little while longer period.

I know this is disappointing because you’ve had several glorious months of feeling free and normal again. With the transplant, the hopes are that it ensure that feeling for a lifetime ahead. So hang in there, Jamielynn! Please keep in touch. I’m here for you anytime you have questions or just need someone to talk to.

Wishing you speedy recovery from covid. Were you given infusions to help with recovery from Covid? When do you begin your treatments for AML?