Cord transplant anyone?

Hi @pefishback Back when I had my MUD (matched unrelated donor) transplant, (6+ years) cord stem cells were generally reserved for patients where a suitable HLA donor match wasn’t available. The cord registry (with preserved cells) has grown exponentially over the last decade, making cord cell donations more readily available. This would be a good discussion to have with your transplant team doctor as to which option would be the better for you.

While you’re waiting for other members to reply about their experience with cord stem cells there might be a book you’d enjoy reading by a gentleman who had a double cord transplant in 2016. His name is Steve Buechler. I have his book and remember chatting with him briefly many years ago. Really funny guy who found some humor in all of this AML/transplant stuff. Here’s his website. The book is available on Amazon too.
How Steve Became Ralph: A Cancer/Stem Cell Odyssey (with Jokes).
https://stevebuechlerauthor.com/
If you haven’t read this yet, here’s a link to a paper in Pub Med.
Is There Any Reason to Prefer Cord Blood Instead of Adult Donors for Hematopoietic Stem Cell Transplants?
https://pmc.ncbi.nlm.nih.gov/articles/PMC4707249/
With the newer protocol of preemptive treatments presented in some transplant centers, the risk of serious or chronic GVHD has diminished over the years. Larger, research/teaching hospitals such as Mayo are the better options for positive outcomes. Larger facilities also have deeper benches of specialists who can be utilized should there be any unexpected issues. Long term follow-up care post transplant is also vital, not just for the first year.

It’s also important for you to trust your BMT team. They will initiate the donor search and your doctor will then compare your DNA panel against that of potential donors for the best paring. Usually that decision isn’t left with the patient. There are so many factors, besides HLA matching that can lead to a positive outcome in this quest for a 2nd chance at life after AML.

Have you talked with your transplant doctor about a potential match? What’s the timeline for your transplant?

@loribmt — Steve and I became acquainted this past July through Blood United’s “mentor” program. He’s the first person who told me about cord transplants, and I have in fact starting reading his book.

I had an informative appointment with the folks at Ann Arbor today, and it seems that, if I need a transplant in the future, I should go with a bone marrow transplant and not a cord one. I won’t dwell on the details here. At this time, I don’t have a transplant scheduled, but we will proceed with one should I relapse or if a modified MRD test comes back positive.

Here’s an interesting newspaper article Steve shared with me yesterday:
https://www.startribune.com/new-research-from-minneapolis-nonprofit-may-allow-more-bone-marrow-donations/601492171
Thanks for bringing the PubMed article. I’ll take a look at it shortly.

Cheers,

Paul

@pefishback Hi Paul, It’s cool you were able to meet with Steve. He’s been a great advocate for stem cell transplantation and shares his story with humor, which can help calm some jittery nerves.

I also read that article in the Star Tribune yesterday. There’s been so many advancements in this field, hopefully opening up the availability of a match for patients who have a challenging time with finding their DNA twin!

Looks like you’re a reader. I have a great book suggestion for you on the history of stem cell transplantation. It’s an excellent read! Living Medicine: Don Thomas, Marrow Transplantation and the Cell Therapy Revolution. By Fred Applebaum

Well, hopefully you won’t require the BMt in the future but if you do, you’ll know you’ve done your research and can enter into that adventure well prepared. I’m here, along with numerous other members who have walked the walk and we’re happy to help out where we can.
So what’s your next steps? Are you in a watchful waiting period?

@loribmt — thanks for the book suggestion. I’m having another biopsy done Tuesday, along with a special type of flow cytometry MRD test that looks for NPM1. It will help us determine whether certain pre-leukemia cells found at my time of diagnosis are now leukemic. If the biopsy shows remission and the NPM1-MRD test both come back negative, we will simply continue to monitor. If either test comes back positive, then we’ll move to a transplant.

@pefishback Sending positive vibes for a clean biopsy Tuesday. NPM1 was one of the 3 lovely mutations that launched me into this ‘career’ of mentoring people with AML/BMT. 😉. We never know where life leads us…
Please let me know what you find out, ok?