Newly diagnosed with AML (FTL3 TKD)

Does anyone know which mutations in lukemia are the worst....

@bettersleep68 There are several mutations that can be associated with Acute Myeloid Leukemia. Some mutations may pose a little more of a challenge being resistant to treatments than others. Since you asked, here is a list of, I guess you can call them, the ‘worst’ offenders…not in any particular order. They each have their own characteristics: FLT3-ITD, NPM1, IDH1, IDH2 and TP53.

The good news is that there have been huge advancements in treating AML over the past decade. Especially with targeted drugs for some of these culprits.
According to an article in Nature.com from The Cancer Journal, “Since 2017, twelve agents have been approved for the treatment of AML subsets.” https://www.nature.com/articles/s41408-024-01143-2

It’s important to note though, just because a person has one or more of these mutated genes, treatments and outcomes can vary widely from what statistics show! So please be careful not to run down a rabbit hole with this information. I had 3 of these mutations with my doctors giving me less than a 50/50 chance. Here I am almost 7 years later from my diagnosis with AML, living an amazingly healthy life. I received the targeted drugs which significant success. It’s super important to remain optimistic that these treatments will work for you!
How have you been feeling with your treatments? How have the labs been looking lately?

Did you see that Carolyn Kennedy's daughter has been diagnosed with AML?

@normahorn
It isn’t Carolyn Kennedy.
Please check again.

@loribmt
So happy to read of your success long term with AML. I believe you did have a BMT correct or was it induction therapy and on going maintenance?

@loribmt .thank you for the information..my labs are all good...I have these mutations that just won't go away..

Hi @sonieaml. Thank you, I’m happy too! ☺️ It was an arduous odyssey with AML. The initial induction and two consolidation rounds of chemo. Those got me to a temporary remission but doctors anticipated a relapse within the year. Long term, ongoing maintenance wasn’t an option for me. So a month later I had a BMT. That sealed the deal for me. Some of the meds available now, were not approved yet at the time of my transplant. Continued research and developed are so important to finding cures for this nasty form of blood cancer.

It’s really wonderful that you’re doing well on your treatment program! Years ago, people in our age group didn’t have many, if any options. And thank you for being such a positive voice in this AML support group! It’s important so that members like @bettersleep68 realize that these treatments can work to help keep AML under control.
Wishing you and your family a Happy Thanksgiving. We all have much to be thankful for. 🦃

@loribmt
Thank you for being here for us!
Your first hand experience is invaluable.
Maintenance for me has been, as you noted, in part, because of all the tremendous advances that have been made in the past 3+ years and continue to be made! I will have a BMB on 12/5…had an MRD blood draw this past week. Looking to locate the cause of my WBC, ANC and sometimes platelets not coming back up. Solution may be as simple as just cutting back on my treatments or extending them out from every 5 weeks to every 6-7? The other cause may be I have developed new mutations. Whatever they find I am thankful every day for the care team I have and their willingness to help give me a great quality life. Thanksgiving wishes to all not just this next Thursday but EVERY DAY!

@normahorn
I read she was diagnosed in May 2024. She had a BMT. It appears, if the article I read is correct, she has relapsed. Prayers for her and her family along with everyone facing health challenges!

@bettersleep68 If I may give you a suggestion, as a survivor of AML myself, please try not to get hung up on the fact that the mutations causing your AML won’t go away. I think that notion is getting in the way of your trusting the treatments might work.
Let me explain a little how this works, at least from my basic understanding. Every second, your marrow produces several million blood cells. Over the course of a single day, that translates into 200 billion red blood cells, 400 billion platelets, and 10 billion white blood cells. Each replication is an exact copy of each other. Until something goes wrong and there’s a misfire on a single strand of DNA. That can become a mutation.

There are parts of DNA strands which coincide with a specific mutation. So, if the little section that misfires coincides with, let’s say, the FLT3 gene, it can set off a chain of events for millions of defective cells to be produced and proliferate out of control…each one with the identical mutation to the other. And we can have more than one mutation at a time. Each mutated cell will have its own characteristics.

Mutations, meaning defective cells (cancerous) caused by a mutation on a gene, won’t go away unless all of the cancer cells are destroyed. All it takes is one rogue cell to remain. It can then continue to replicate out of control again.

Because of the amazing amount of cells produced every second it’s bound to happen that there will be a defective cell here and there. Our immune systems are uniquely equipped to seek them out and destroy the defective cells before they start replicating out of control.
However, some of the mutations associated with AML, trick our immune systems into no longer recognizing them as cancer cells. Without the guardian protection of our immune system, the defective cells replicate, churning out carbon copies in great volumes until they outnumber the healthy cells.

The goal of the chemotherapy you’re receiving is to kill off quickly dividing cancer cells and to interrupt their replication. However, some of these mutations allow the cancer cells the ability to elude treatment or to go dormant during chemo. They lie in hiding in the body, until conditions are more favorable. (ie, when chemo has cleared) Ongoing maintenance therapy helps keep those re-emerging cells at a minimum and hopefully under control. Sometimes chemo can be a cure for AML if all the cells are destroyed. But like I mentioned, that can be difficult with some of the mutations. The best that can be done is to keep them under control. So that’s why ongoing maintenance is important.
The only potential cure, at this time, is a bone marrow transplant with stem cells from a donor. With that transplant, essentially, the patient is given a completely new immune system. The premise there is that the new immune system, unfamiliar with the mutated cells will detect them as invaders and wipe them out.

I hope this is a helpful explanation. I know this is a lot to take in…the AML diagnosis, along with the treatments and the huge disruption in your normal way of life. The good news is your labs are fine and the meds appear to be working for you, which is hugely encouraging. What does your doctor say about your progress?