Relapsed AML: Anyone choosing no treatment?

Good morning, Kathy. Looking back on another reply you wrote, I see you and I have the same 3 mutations. Odd things to have in common. 😅 But somehow that unites us in this weird odyssey of AML we’ve been weaving through, eh?
It’s excellent that there are no blast cells present yet. That paints a clearer picture and is encouraging. That does give you more time to get on with your life. I love, LOVE that you’re able to go live with your daughter in a few months. That time together will be such a treasure for both of you.

I think you’re handling this well and I truly can understand and respect your decision to ride this trail out on your own pony… I remember my grandmother saying those words when I was little. It just popped into my head…hadn’t thought of that phrase in a long time. But it’s so appropriate.

When you move in with your daughter, will you still be near your hematologist oncologist?

I wrote a whole reply, but I don't think it went through!
Riding the trail out on my own pony is a great way to put it! I've ridden horses and thought lessons for 20 years ☺️
My daughter spent most every day with me during my (most of) 5 month stay going through treatment, I think her car can drive itself there, though it's about 45 mins from her.
You have no idea what comfort this gives me, talking to someone who gets it and respects it. Thank you!
I feel like my doctor doesn't and I could really use the support from him! Oh well.
They have said that no matter what, once the genetic mutations are returning it WILL lead to AML but since they're pushing for treatment rather than playing it out, I feel like that's a selling point for them. I'd like to hear from someone who has no stake in this: is this definitely going to end that way, just a matter if time? They are not multiplying tenfold yet, merely creeping up a few points at a time.

Hi Kathy, Oh my gosh, I had no idea about your equestrian background! That was a perfect phrase for you then. 🐎. I had no formal training but spent a lot of time with horses growing up, spending summers on my grandma’s farm. Mostly road bareback on old Sam. He and I spent a lot of sunny days trotting over the hills and through the woods.

Back to reality… I’m thinking, for your doctor, it’s a tough position for him. He has potential options for you to slow the progression or maybe put you into remission again. From his perspective I’m expecting he sees you as a tenacious and healthy woman with no co-morbidities except for these pesky re-emerging mutated cells. A woman who could have quite a few more good years ahead if you gave some of the new meds a try.

While they are classified as a chemo medication, they’re taken orally and generally better tolerated. There’s a targeted med for the IDH2 mutation that can slow the progression. I had to take an abrogating med that targeted the FLT3 mutation between induction and 2 consolidation cycles. I had no discernible side effects. Just tossing that out there!

But from your perspective, believe me, I completely understand! Your doctor has never been through the rigors of induction/consolidation and the subsequent chemo in dealing with AML. It’s not for sissies, that’s for darned sure. I was reflecting on a few of my weaker moments of treatment while considering what to write to you this morning. No one can prepare you for that ahead of time and once you go through it, there can be some knee jerk reactions of “burning your hand a stove and not wanting to ever do that again”. Not going forward with treatment is an absolutely personal choice! If you’re at peace with this decision, then I hope, by your being honest and pragmatic, this will have your doctor on board to help you along this path you’ve chosen.

The two re-emerging mutations in your bmb and now in your blood are indicting that some of them eluded chemo and are now replicating and coming out to play again. If you choose not to intervene, from my understanding it is a matter of time before they start crowding out the healthy cells. But as your doctor indicated, this will be slow and steady.
The good news is that the FLT3 mutation hasn’t shown up again. The FLT3 gene helps regulate cell survival and reproduction. The gene mutation causes immature blood cells to multiply uncontrollably.

It’s a cold and blustery day in the north woods of Wisconsin. Time to haul out the winter jacket and sock hat for my walk today! Leaves are flying everywhere!
Write anytime, Kathy!

I took Midostaurin when in the hospital and for a while it was fine, but rhen caused pulmonary hypertension which dropped my oxygen levels into the 80s, it was a little scary. They immediately took me off and luckily that eventually passed. Meds and their side effects, sheesh.
I bet Wisconsin is getting quite chilly! Even here in Atlanta it got down into the 40s overnight thus past weekend. Stay warm and please stay in touch!

Hi Kathy, thought I’d pop in to check in on you. ☺️
Coincidentally, I also took the abrogating drug, Midostaurin, between chemo rounds to target the FLT3 mutation. It’s interesting that it is the only one of the 3 mutations you had that hasn’t resurfaced! That’s pretty meaningful. To me it could be an indication that the Midostaurin worked well for its intended purpose!! Whoo whoo! That’s awesome. From my understanding that’s the mutation that is one of the worst offenders in our AML.

Just wanted to let you know I’m thinking of you and wishing you well along the way. ☺️ Lori.

Thank you, Lori! I so appreciate you checking in, and yes, I'm grateful that one isn't back. I have a BMB November 20th so I'll get a clearer picture of what's really happening then
🤞🤞 it's all just snail slow!

Hello all!
I'm currently in molecular relapse so I'll have quite a few good months ahead, during which I have so many wonderful plans with my 3 adult children.
Is there anyone out there that is also choosing no treatment? I'd love to connect.

I’d like to hear about your decisions. I’m on the front end of treatment for AML…mine just transitioned from MDL.

I am in a relapse for AML and my doctors are giving up on me after committing the fact that they don't do bone marrow transplant until they informed me it's too late after I demanded answers for an entire year I was in remission
I don't want to die. Is there still hope for me?????

I wish you all the best with the treatment, I hope you get to remission quickly! I've never heard of MDL.
My decision is based on a few factors, but the treatment was long and I was self employed so not working for 7 months destroyed me, I can't do anything like that again and they're talking about a bone marrow transplant. Brutal, financially devastating for me and I just don't want to go through that.
I've had an amazing 2 years, healthy and good, but the living from blood test to blood test has caused me so much anxiety, I can barely stand it.
My children have known from the start that it was a one and done deal; if it came back, no treatment. They are respecting my wishes and we're going to travel and make (more) incredible memories for them