Anyone with AML? If so please let me know anything helpful.

Yes - he has an excellent quality of life - it is a year now but he has done great. He was just recently at my door, asking us to get behind a mutual friend that wants a seat on our HOA Board of Directors. (We agreed - he was quite persuasive )
I see in our monthly HOA newspaper that he teaches water aerobics twice a week. He and some other neighbors and friends belong to a band and they play at various events in our area.
He and his wife have a dog (friends cared for the dog at their own home while the owners were in Houston) and a large home. It has a separate house and I hear the band practicing out there. I also see him relaxing in their yard.
He and his wife own other properties that they manage; they have kids and grand kids out of State that they visit.
He has no GVHD at this time; he said that all the cells in his body are his donor's - probably not "quite accurate" - but he states he has absolutely no cancer cells in his bone marrow.
GVHD was a major concern as he approached treatment as his donor was not a "perfect" match; his wife was terrified. He did have moderately serious GVHD "along the way." I never heard how bad it was. He was in Houston at the time but I heard that MD AnDerson (mda) did a fantastic job of managing it.
He and his wife had gone out of our city to Houston to have his treatment at MDA. They rented lodging and stayed there so the "ups and downs" of his six month treatment are vague to me; also his wife did not want to share them with people back home. He and I exchanged a few emails and I mainly had conversations with a very close friend of his wife's. (Interestingly, his wife set up the first appointment at MDA and I did step her through the process of working with MD Anderson and the local doctors. She told mutual friends how smoothly it all went. It wasn't "me" - it was MDA. They facilitate thousands and thousands of these referrals.)
The local oncologist advised against having the stem cell transplant. Friends here that I spoke with were diplomatic but they were largely against it. He was given three to six months to live by the local health care physicians. He wanted to live.
He came to me because we had (and still have) a patient advocacy firm. At one point, our patients were largely transplant patients; we only worked with the most experienced centers that could demonstrate (after grueling multiple week transplant center site visits by our team) that they knew and followed the best practices for a given illness. (We work with very few patients now who have both chronic and acute issues and it is much different.)
In our experience MD Anderson in Houston has been and still is one of those excellent centers (I have a cousin there now and also a "dear friend of a friend" - neither has a hematological cancer); MDA was experienced with his type of AML (acute myelomonocytic leukemia). Over time we have had numerous patients there that had what only could be called miracle outcomes.
But MDA is very honest with patients: They tell it like it is, describing they realities of what patients can and do experience. It is not for the faint of heart.
I am telling you all this in a somewhat/very disorganized way because you should have your stem cell transplant at a center that is optimally experienced in your type of AML. Geography should not be a concern. You need to be an expert in your type of AML so you can ask the right questions. Ask to see their data. Understand if and how others do it differently.

@blakeman I also was on the Az-Ven unfortunately I did get terribly sick breathing heart and hallucinations! My Dr didn’t offer any other solution.

@babshere1 - I am so sorry that this drug combo did not work well for you!! I hope that another doctor can find a better Rx choice, or a different dose. You will be in my thoughts.

Hi @jbw165 This is a big decision for you whether to go forward with a stem cell transplant. For many, including myself, they can be an opportunity for a 2nd chance at life when there are no alternatives remaining. As with any transplant, there may be risks with those rewards, including the potential for gvhd. There have been advances since my transplant 7 years ago which help to prevent many of the more serious graft vs host issues. Almost every patient will have some level of gvhd. But most are handled quickly by our transplant teams.

If you don’t sharing a little more about yourself, what led you to the possibility of a bone marrow transplant? Was it AML? Have you been evaluated by a transplant team?

Thanks, so much for responding, Lori! Yes, I have AML, am 74 years old.
I’m trying to decide whether to do the sct or not. I’m in good health, but
I’m concerned that I will come out of the process significantly weakened or
frail and that my quality of life would be compromised. Right now, I’m in
remission and feeling pretty decent physically. My mental state is a
struggle because of this decision and it’s implications.

@loribmt I’m now with MD Anderson in Kokomo , Indiana. I have a wonderful young oncologist who just did a bone marrow test on me. Ouch! I’ll be seeing him on May 1 to see if and what might be ahead for me. I’m thinking positive and hopeful for a treatment to start soon. I’ll keep you posted as I proceed.

@babshere1 Hi, I was 75 when I was diagnosed. I met with the transplant team; they found 5 matches for me. The 24 hr care required for the 100 days after transplant was something I did not want to navigate with my family and friends. I elected to forego BMT and do maintenance instead. I have passed my 2 year mark and in my latest MRD (measurable residual disease) blood test no FLT3 or NPM1 mutations were found. I currently have maintenance treatment every 6 weeks (down from every 4) consisting of Dacogen and 2 days of Venclexcta. On the 27th of May my Hem/Onc will discuss going strictly to chemo pills. I did have a BMB in December and the SF3B1 gene was discovered. You may know that is a pre-courser to AML. We are in a wait and watch on that. Meantime I have just started a 2nd part-time job. Granted I get tired but heck I am 77 and would be tired without AML!
I hope whatever you decide that your outcome is terrific. I am considered to be in derp remission!

Hi @babshere1 This is such tremendously good news!! I’m so glad you were able to get in with MD Anderson! Your previous situation, with the dismissive behavior of your doctor, left me clutching my pearls!! That person has lost all empathy and out of touch with his patients!

It sounds like you’re in wonderfully capable hands now! That will go a long, long way in providing you with positivity and hope!

The bone marrow biopsy (bmbx), while not pleasant, will provide a great deal of information for your doctor about your marrow, its ability to produce healthy blood cells, confirm a diagnosis and allow them to come up with the treatment plan for you! It’ll take a week or more for all the components of the biopsy results to be finalized.

This was such good news and a relief to see. So thank you for sharing! I’m sure your daughter is so relieved too! I’ll be eager to learn more about what’s next for you!

Is this clinic nearby or do you have to travel a distance?

@loribmt Yes I’m happy to have another chance to see where I stand with another Oncologist. I’m in Michigan so I travel 3 hours. to the clinic in Kokomo. My daughters husband and my ex Jim do the driving.

@sonieaml Wonderful to hear your in deep remission. I hope it continues for you to allow you some energy for your jobs.