Acute myeloid leukemia (AML): What can I expect?

I also had an allogenic transplant in 2020 to treat AML. I am approaching my 3rd “Rebirthday” and am doing great! I had some bumps along the road since then - high liver enzymes and skin issues due to sun exposure because of my antifungal medication. However, I golf 3-4 days/week and play pickleball! I was fortunate to live 1-1/2 hours from the Mayo Clinic and had a great team there! I am happy to share my experience and answer any questions. I wish you all the best in your treatment!

Well, I promise to stick with you through all of it and I know many others on here will be right along with you. ☺️
One thing that will be required is for you to have a caregiver who will accompany while you recover from the transplant, especially the first few months. Do you live near the clinic that will do the transplant?

Thanks for your comments an info yes pretty nervous about it but I have to go for it an stay strong an hopefully come out on other side an yes u have to trust your docs an the team

Thanks for your comments an info yes pretty nervous about it but I have to go for it an stay strong an hopefully come out on other side an yes u have to trust your docs an the team

Howard, it’s really positive that your doctors now feel you might qualify for a stem cell transplant. Life holds no guarantees, but a bone marrow transplant for your MDS is considered a possible cure for your blood condition. It gives you the best shot at a healthy life. While it’s not an easy journey it is one well worth the effort.

The link I’m posting is my story regarding the same type of stem cell transplant you’ll be having. It’s called an allogenic transplant. You won’t be able to use your own cells for this so you’ll need cells from a donor. They’ll be found for you by a transplant coordinator when the time for transplant nears.

Here’s the link where you’ll meet other members who have had allogenic stem cell transplant along with @edb1123 @alive @kt2013 @waveg
~~ My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
There are other discussions of bone marrow transplants in our forum. You can peruse those by typing Bone Marrow Transplant or Stem Cell Transplant in the search box at the top.

And of course, there is a lot of information online but I caution you to avoid visiting with Dr Google.
The information points out risks, side effects and some rather frightening details that may or may not even apply to you. In my case, I really believe that knowledge is power, so I did everything I could to research my treatments for AML. However, when it came to the bone marrow transplant, I just trusted my doctors and team at Mayo to do their thing and I just did what they told me. Because the information I started to read, only served to cause anxiety. Each person is different and we don’t experience everything that’s written in these articles. So we often start dreading things that won’t even happen.

When the time gets closer for transplant you’ll meet with a transplant doctor and their team. You’ll have educational classes and quite a few tests to see if you’re able to handle the physical demands of the transplant and medications.

I’m currently mentoring a lovely woman who is 69. She is in my hometown where I mentor patients who will require a transplant in my local oncology center. She is now 13 days post transplant and doing really well! She’s very relieved and excited to be able to have this second chance at life.
So, Howard, it will feel daunting but you have a lot of us here who have walked the walk and will help you with encouragement and hope…
Do you have any specific questions?

Lookin at stem cell transplant in next 4 to 6 months like to hear others here who have gone thru this

Hi Howard, If I remember correctly I think you had the first round of chemo beginning March 20 so that means you’re getting ready for another session in a few days. Usually with monthly chemo, we start feeling pretty good again by the end of the month, just in time for that second round. I know…not something to look forward to, but at least now you know that there’s a recovery period. 😊

How are you feeling? Have you had any bloodwork done to see if there’s a change in you numbers?

Hi, I'm a new member of your group. My husbsand was diagnost...just yesterday with Mieloma Múltiple and your comment help me to keep some calm in this moment, but I feel so sad, and I don't have any idea..so..Thank You. God bless all of You. Hughs from Cuba.

Well, Dell, I always try to help. I am 77 (April), and I actually know very little. But I can read. Some time back I had a good friend who was a very kind and capable doctor. She told me some of her thoughts and guidelines. First, if a person is our age and feeling good, there is nothing to make us think we will not live to 100. If something shows up that we can deal with in the space of a couple months, make that perhaps 95. If it really impacts our lives, and we need about 5 years to deal with it, we might make 90. If it is chronic, and will last, make the lifeline 85. If it is acute, 80. If the doctor wants paid in advance, make certain your will is in order. My guess is that I have about a year.
I have been anemic for about 60 years, and had some form of Amyloidosis for about 40 years. But both are progressing, so I expect about a year or so. Depends on how warm my wife wants to be with me. At my age and situation, no one has offered me any treatments. The stats say that I have more danger of dying from the treatments than from the diseases, so I guess I will just keep going until I see the brown side of the grass.
http://bit.ly/1w7j4j8

Hello @joycek the answer to your question: Anyone out there that has survived AML, that is elderly? Well, let’s just say…50s, 60s, 70s. Yes! I’m one of them, along with @alive @edb1123 @kt2013 and several other members. We’ve all required a bone marrow transplant after our initial treatment for AML, which has helped to put us in an enduring remission. We’re all here to offer encouragement and will answer any questions you have.

I also personally mentor several other patients at my local cancer clinic who have been diagnosed with AML. One woman, who is in her 50s didn’t have any mutations which can complicate treatment, so she didn’t require a transplant. She’s 2 years past diagnosis and doing fabulous after a few rounds of chemo.
3 other people I mentor are all in their late 60s, early 70s…required bone marrow transplants ( they are also stem cell transplants) and again, they’re doing really well.

Here is a link to a discussion full of conversations with members who have AML. You can reverse the order of the discussion from newest to oldest to get the most current replies.
https://connect.mayoclinic.org/discussion/can-someone-address-acute-myeloidal-leukemia/
AML has a tendency to just show up out of nowhere and clip you right off at the knees without warning. That’s what happened to me too. The day after my 65th birthday was the first day of my symptoms. That was 4 years ago. I’m now 65, healthy, active and enjoying every day with my second chance with life. So yes, it is possible to get through this and you have a great group here who will help you along every step of the way.

Are you undergoing any treatment yet? Have you found out if there are any mutations linked with your diagnosis?