Stem Cell Transplant Decision & Success

Posted by jeffhampton @jeffhampton, Dec 31, 2024

I am having a challenging time deciding whether to move forward with a stem cell transplant. I have AML with INV 16 and was diagnosed on November 18, 2023. Initially, I went through Induction Chemo followed by 4 rounds of Consolidation Chemo then I relapsed in Sept. 2024.

My challenge is getting straight answers from my oncologist about the risks, the chance of success, how long I may be down, etc., based on their experience with a 57-year-old male. The answers I receive are very vague. I would also appreciate guidance from someone who has been through an STC transplant. This too has been difficult. I left out that my donor is one of my daughters (half-match).

I would greatly appreciate sharing anyone's experience and input. I am very confused and the past 13 months have been a roller coaster. I would really like to get off this roller coaster.

Interested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.

katgob | @katgob | Jan 7 11:52am

jeffhampton- OMG. With that caregiving team you will have one or more who may just be the extra help that makes it work. We found not all helpers are the same, but each helps. Each has a specialty like our doctor and medicals teams.
I am day 272 past transplant. Crazy. Things i did from the time i was released from the hospital at day 25. NO GVKD, you get released earlier at COH in Duarte, CA. At home guided by my DR's orders and Lori here on Mayo, I drank half my body weight of water daily, took every single pill at the time directed. Ate healthy and rested. This startedday27 till Day100 after transplant. Walking was essential. I started small, but every day, by the time i left my caregivers house i did 5000 steps a day. Now i walk about 6 miles a day more or less.
Being healthy at the start is essential. You said you were and the tests they have you complete before you can have a transplant must be passed to move forward.
It is hard for me to believe today i even had a transplant. But my hair is only 1 inch all over or a bit more. That is my reminder that i am 3 months from 1 year. Once a Bone marrow transplant patient, always one. Let me be a great patient!

mary612 | @mary612 | Jan 10 7:23am

In reply to @jeffhampton "katgob, Thank you very much for sharing. You are an inspiration to me. I am very..." + (show)

Hi @jeffhampton
You’ve already received some wonderful advice and hopefully comforting words from many here. For my husband and I this forum has been a life line in our darkest hours. We all truly understand what you are feeling when the rest of the world, for the most part, doesn’t. I think you may have read about our journey at the link Lori shared about my husband’s high risk AML and stem cell transplant on June 12, 2024. Today he is doing very well at day 212. He is 65 years young and continues to recover from the transplant, gaining strength every day. He just told me a couple weeks ago that he is starting to feel like himself again. 🙏
Because his AML involved ‘high risk’ genetic mutations, he is on monthly maintenance chemo (Azacitadine and Venetoclax). So far tolerating it pretty well. Like many others, we are grateful for each day and try not to get caught up in thoughts about the future. We have today, one at a time!

I’d like to extend an ear to your care team as well as you. If any of them or you have questions or would like insight into anything regarding the transplant journey, please reach out here.

Sending you healing thoughts.

Mary

Lori, Volunteer Mentor | @loribmt | Jan 10 7:58am

In reply to @katgob "jeffhampton- OMG. With that caregiving team you will have one or more who may just be..." + (show)

Good morning, @katgob and @mary612 It’s so rewarding seeing the messages both of you are sharing with the new members in this conversation about their upcoming SCT adventures as either patient or caregiver. It feels like only months ago when I was having the same conversations with you! And here you are, coming full circle and now using your experiences to serve as someone else’s survival guides. ☺️

Cheers and Happy New Year to you and the new immune systems that are making life possible!

@katgob, are you any where near those horrible fires in LA? Please stay safe!

katgob | @katgob | Jan 10 1:44pm

Lori,

I love seeing Mary and your posts too. I want new people to have choices. Your posts remind me how much it helped me get onto the transplant train and head down the track.

The fires are down the freeway, but close to the college i work at. Many of us know people who lost their homes. These are bad fires, no one could plan for.

Lori, Volunteer Mentor | @loribmt | Jan 10 4:18pm

In reply to @katgob "Lori, I love seeing Mary and your posts too. I want new people to have choices...." + (show)

Kat, I can’t even fathom the heartbreak and hardships that are occurring in your area! It’s all so tragic. I’m glad you’re safe…stay that way, my friend. Hugs.

jbforet | @jbforet | Feb 13 11:09am

In reply to @loribmt "I know what you mean about going through this journey alone. When I had my AML/BMT..." + (show)

I am starting the SCT next week . oral chemo for 20 days followed by 5 days of transfusions. 1 day rest then the new stem cells. I am at MD Anderson Houston.
Sister is my donor 10/10 match .
Will keep you updated.
Thanks

Lori, Volunteer Mentor | @loribmt | Feb 13 12:01pm

In reply to @jbforet "I am starting the SCT next week . oral chemo for 20 days followed by 5..." + (show)

Hi @jbforet. Last we talked this was just a recommendation so I’m happy for you that you’re able to go ahead with the BMT for MDS! It’s quite a journey, which I referred to as more like an odyssey. ☺️ But it is the path forward to a 2nd chance at life.
Having a higher risk MDS, with potentially morphing to AML, you’re wise to do this preemptively. If I remember reading one of our earlier conversations your bloodwork was showing an increase of blasts in the blood. So this is good to get underway now!

It’s great your sister will be your donor! Keeping it in the family… hope there’s no sibling rivalry with conversations such as “You owe me now!” 😅

I know it’s going to cut into your golfing for a while but if all goes according to plan, you’ll be having many more pleasant years ahead on the course! So keep those clubs polished!

Like I mentioned before I’m here, along with the rest of us who have had our BMTs, to offer support and encouragement along the way…so don’t hesitate to pop in when you feel like giving an update! In the meantime, do you have any specific questions or concerns?
What is the actual Day 0?

jbforet | @jbforet | Feb 13 12:33pm

In reply to @loribmt "Hi @jbforet. Last we talked this was just a recommendation so I’m happy for you that..." + (show)

Day 0 is scheduled for 3/10. Thank you for all the kind words.

Lori, Volunteer Mentor | @loribmt | Feb 13 1:37pm

In reply to @jbforet "Day 0 is scheduled for 3/10. Thank you for all the kind words." + (show)

Here’s to smooth sailing from here on! There may be a couple weeks ahead (after transplant) that will test your mettle. But we’re the same age so I know you didn’t get here without having some spirit of endurance, right? So take one day at a time, listen to the directions of your BMT team and stay the course. I’ll be checking in with you from time to time. No need to reply if you’re not up to it but I want you to know that this is doable and worth it on the other side of transplant!
Cheers to your new B-day…Re-birthday…March 10. Yes, you should get presents! 😅 Though your sister is giving you the Gift of Life so I’m not sure what could possibly be better than that! 💕
When do you get admitted as an inpatient?

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