How long from diagnosis of AML typically comes the BMT?

Hi Susan, Welcome to Connect. From my experience, with basically the same timeline as your AML/7+3, my transplant was 4 months from diagnosis. So ideally, the transplant would take place around a month after your last consolidation so there isn’t a gap between treatments.
There is one more round of pre-conditioning chemo immediately prior to the transplant so that pretty much does a clean sweep of the marrow to help produce a squeaky clean environment for your new stem cells to set up housekeeping.

Since you’re still working through the chemo phase of AML, it’s not at all unusual to experience lingering fatigue. I remember the feeling! When you’re such a super active person and then forced to take nap breaks during the day there is a level of unexpected frustration, right?! With the transplant, there will be a couple months ahead with similar experiences, however there’s a light at the end of the tunnel and it’s not a locomotive. 😉 It’s all worth the outcome when you’re given a second chance at life. Without it, if you have AML with some of these tricky mutations that defy remission, a bmt is the only option available for a potential cure.

There are quite a few of us who have gone through the process of an allo transplant for a variety of illnesses such as AML, MDS and other health issues. Together we have given a great deal of information to help you along this new adventure…anything from planning the extended stay to what to expect and life beyond transplant.

Has your BMT found a match for you yet? Do you have any specific questions I can help you with?

I had an appointment with my Dr on the 17th and yes they have a 10/10 match for me. A 19-year-old. This person was going in for a few more tests last week. My son was a 6/10 match but the Dr. said the 10/10 match was so much better! yeah me!

It is so hard to plan. I live in Kingman, AZ, and travel to the Mayo in Phoenix, AZ to see my Dr. She is the best, but not knowing when is driving me nuts! I have a 13-year-old dog that I need to make sure is taken care of, and we need to drive the 3 hours there and sometimes back in the same day. (that truly wears me out!)

I am so excited to be able to have a second chance. I am not done on earth yet!! Thank you for the response.

My Dr told me recently that my son was a 6/10, and there was a 10/10 that was in the testing faze. I'm hopeful for a cure and hope to be able to get back to my 'prior activities' before AML. is that even a possibility? to get back to what I did before.

Hi Susan, Before being diagnosed with AML at 65, I was very active, walked 10 miles daily, biked, exercised, had tons of hobbies and was always busy. AML clipped me off at the knees within 3 weeks and odds were not in my favor! But here I am, now 5 years post transplant, 70 years young, walking at least 7+ miles daily (time constraints, not energy related). and feeling as though nothing ever happened. 😉 My donor was a 20 year old male, 10/10 match, from the U.S. My husband jokes that I have more energy now than before. Not sure about that because I was always active but now, maybe I don’t take any moment for granted? I’m always doing something! But I do feel like I’m in my 20s!

The first few months post transplant can be challenging, especially for someone who is active. Recovery is a marathon, not a sprint and the fatigue can be frustrating. But most people I know are back to living pretty normal lives!
I have a couple of discussions you might like to read through. You’ll meet some of our other BMT members such as @alive, @edb1123 @kt2013 @jenmkr63 @timt347 @jrwilli1 (husband had transplant) @tkidd51 and most recently @katgob who is about a month post transplant.

Here are the links:
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/
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Snapshots of hope: Life on the other side of transplant. https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/

Having a BMT is the only potential cure for AML. Yes, it can come with risks and there is no guarantee . But it is our shot at a 2nd chance at life and well worth the effort.
I hope this gives you some encouragement!

Hi Susan! I’m in Tucson and also drive to Phoenix to see my Mayo doctor. My transplant for AML was in 2016 in Indiana. It was some rough going for a while, but I have recovered very well since then. I’m 59 now and went back to work full-time almost 6 years ago. I do have a mild GVHD and a few other post transplant conditions, but they are all well managed by my doctor. Transplant gave me my life back. I wouldn’t have survived without it.

I see my doctor every 3-4 months for my follow ups. Let me know if you are interested in chatting when we are both in Phoenix at the same time.

@alive what is your travel time to Mayo? I would love to chat with you as this becomes 'real' .. I also want to live and see my kids and grandkids and great-grands. I am also a Rotarian and love making a difference in the world. Since diagnosis, I have been pretty sequestered away from people.

Are you able to get out and about and drive. I haven't driven since March. A month in the hospital and then home hardly able to walk for the first week or so. I am doing really well but not up to where I was. Taking Chemo pills and now consolidation therapy is making me very tired.

Susan, I have an appointment coming up in four weeks. I will send you a private message with details.

My Dr. keeps telling me not to lose weight (I have always been fluffy) She said I would be losing weight during the transplant process and wants me to stay healthy. Before diagnosis, I swam two hours a day doing aqua aerobics (which I love) and an hour a day with my trainer at the local gym. I was diagnosed with AMl on 3/3/2024 and have been on chemo pills since. I am very tired now and most recently doing consolidation chemo. I am looking forward to having some energy back and hope to have the transplant in July (I just had a call yesterday!!) Can you tell me about the weight loss/

Sue, Well, that’s exciting to get the transplant call! Now it gets real, right? Regarding weight. If you haven’t lost any during your AML treatments then you’ll go into transplant in good shape. Your doctor is right, any extra pounds right now are good! I didn’t have any spare fluff by the time I got to transplant after several months of intense chemo for the AML.
My weight loss actually started about a month before I was diagnosed…losing 10 pounds rather rapidly. However I had been trying to drop a couple pounds of fluff so I just thought my efforts were paying off. Silly me. I had no other symptoms so it never occurred to me that I was seriously ill. It was the leukemia causing the weight loss. Ha, not a diet plan I’d recommend! Counting the previous 10 pounds, I lost a total of 45-48 in less than 2 months, after my 5 weeks in the hospital with induction chemo.
I was able to regain about 15 pounds before transplant. It was recommended I gain 18 but no matter what I did, that wasn’t happening.

Losing some weight is very common during the first couple weeks after the transplant. Most patients experience some nausea. There are meds which really help to keep nausea under control and it passes eventually. It didn’t take long to regain weight once the nausea passed. So, that is why your doctor is encouraging you to keep your girlish fluff! ☺️ And I’m expecting at some point, when you get clearance from you transplant doctor, you’ll be back to aqua aerobics and your trainer. No swimming in lakes, rivers, oceans or un-chlorinated water though…risk of infections.

I was just reading your reply to @alive about not driving. Oh my gosh, I remember the frustration!! Between the AML treatments and the transplant it had been about 9 months without driving! It was sooooo librating to get behind the steering wheel of my car again. Of course it was driving solo to a blood test at my local hospital. LOL But I had the Radio blaring, singing along to 🎶 Here I Go Again on my Own! 🎶
You’ll get there too soon enough and you’ll feel like Super Woman, ready to take on anything with no fear!

This might be a little different than yours, but I had my diagnosis for amyloidosis on January 5th & had my 1st appointment at Mayo Clinic January 29 & stem cell transplant on March 19th of same year…. I was fluffy & lost about 30 lbs while at Mayo during about a 6 week stay. I was 60yrs & never really got all my energy back & since then have had digestives issues. I did return to work as an RN about 2 years later. I Probably would have earlier, but we relocated from Mi. To Ga. Prayers For A Speedy Recovery…..