1. < Bone Marrow Transplant (BMT) & CAR-T Cell Therapy
Mentor

My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

Posted by Lori, Volunteer Mentor @loribmt, Feb 14, 2021

The past two years have been a storied journey of facing Acute Myeloid Leukemia and a subsequent bone marrow transplant. Being in a high risk category for relapse for AML, a transplant was necessary. Simply put, it would provide a completely new immune system to fend off any remaining AML cells lurking about in my body, after my original factory installed version had become defective in recognizing them. My husband and I shared a collective sigh of relief with the news that my latest bone marrow biopsy, at 19 months post transplant, showed no AML or the mutation which caused it. My new immune system is working!
While celebrating the results with my husband and a pizza, it occurred to me how far I’ve come and how life has changed in the past two years since the onset of AML and the transplant. There have been some challenging transitions but none insurmountable. Of course, life as a genetically modified organism, with two sets of DNA and a new blood type, can have its turf wars with a few GvHD issues, adaptations to medications and such. But I’m incredibly happy to have a second chance with this generous gift of life from an anonymous donor, and through the medical expertise of my amazing BMT-team at Mayo-Rochester. Hopefully I can meet my donor someday to thank him in person. I did send him a card right after the transplant giving him my “undying” gratitude!
We’ve all been given a gift of life. I’d love to hear your story. Lori

What diagnosis brought you to a BMT?

How has it impacted your life and that of your caregiver?

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

jimbond48 | @jimbond48 | Feb 23, 2022

I was diagnosed with stage 3 myeloma in 1992; had 3 SCTs my first decade; was then told no treatments remained “go to a hospice”; I refused; instead entered an out of town experimental drug clinical trial that saved my life; diagnosed with treatment-related Leukemia; had 4th SCT; in remission from both cancers the last decade, 30 years after 1992 myeloma. We welcome opportunities to virtually share our story; no fee, no sponsorship, no medical advice, just our strategies and experiences to try to give hope.

REPLY
athenalee | @athenalee | Jan 17, 2022
In reply to @loribmt "I like your idea of a book! It would be wonderful thing if more people could..." + (show)
@loribmt

I like your idea of a book! It would be wonderful thing if more people could benefit and it was an easy procedure. At this point a stem cell transplant is a serious commitment and used when there is no other option. An allogenic stem cell transplant is not a walk on the beach.☺️

Most of these applications aren’t full stem cell transplants. There’s a huge difference between stem cell treatments and stem cell/bone marrow transplants.
Stem cells can used to regenerate specific areas. I have a friend who had a serious wound which wouldn’t heal well. The damage was reversed with stem cell treatments.

I’ve also entertained writing a book with someone with 2 sets of DNA…which is what happens with a SCT. Perfect murder mystery. 😂. But I see it’s already been done. Any more ideas? 😅

Jump to this post

I’m interested. Between the two of us we certainly have the lived experience! I’ll give it more thought and be in touch! 😁

REPLY
Mentor
Lori, Volunteer Mentor | @loribmt | Jan 15, 2022
In reply to @athenalee "Thank you!! Another fascinating read on stem cell transplant research. Instead of a mystery novel, let’s..." + (show)
@athenalee

Thank you!! Another fascinating read on stem cell transplant research. Instead of a mystery novel, let’s write a hopeful novel set in the near future where stem cell transplantation is a miracle cure for autoimmune diseases, but isn’t such a dreadful procedure as you’ve gone through!

Jump to this post

I like your idea of a book! It would be wonderful thing if more people could benefit and it was an easy procedure. At this point a stem cell transplant is a serious commitment and used when there is no other option. An allogenic stem cell transplant is not a walk on the beach.☺️

Most of these applications aren’t full stem cell transplants. There’s a huge difference between stem cell treatments and stem cell/bone marrow transplants.
Stem cells can used to regenerate specific areas. I have a friend who had a serious wound which wouldn’t heal well. The damage was reversed with stem cell treatments.

I’ve also entertained writing a book with someone with 2 sets of DNA…which is what happens with a SCT. Perfect murder mystery. 😂. But I see it’s already been done. Any more ideas? 😅

REPLY
1 reply
athenalee | @athenalee | Jan 15, 2022
In reply to @loribmt "There are so many applications being found for stem cells in regenerative medicine! Here’s another article..." + (show)
@loribmt

There are so many applications being found for stem cells in regenerative medicine! Here’s another article released this morning. https://regenerativemedicineblog.mayoclinic.org/2022/01/06/reimagining-stem-cell-cultivation/

Jump to this post

Thank you!! Another fascinating read on stem cell transplant research. Instead of a mystery novel, let’s write a hopeful novel set in the near future where stem cell transplantation is a miracle cure for autoimmune diseases, but isn’t such a dreadful procedure as you’ve gone through!

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Jan 12, 2022
In reply to @athenalee "Here’s another article on another novel stem cell transplant treatment - Stem Cell Transplant Seen as..." + (show)
@athenalee

Here’s another article on another novel stem cell transplant treatment -

Stem Cell Transplant Seen as Major Type 1 Diabetes Advance
https://www.medscape.com/viewarticle/961696

Jump to this post

There are so many applications being found for stem cells in regenerative medicine! Here’s another article released this morning. https://regenerativemedicineblog.mayoclinic.org/2022/01/06/reimagining-stem-cell-cultivation/

REPLY
1 reply
athenalee | @athenalee | Jan 9, 2022
In reply to @loribmt "This is fantastic news, Theresa. Thank your for sharing this article! I know BMT is also..." + (show)
@loribmt

This is fantastic news, Theresa. Thank your for sharing this article!
I know BMT is also now being considered more frequently for MS and other auto immune diseases, since those are caused by the our own immune systems attacking our body, By having an entirely new immune system, the old auto-immune response disappears with the conditioning chemo before transplant.
However, the procedure is extremely taxing on the body, not easily tolerated and comes with its own set of issues and side effects At this point it’s considered only with a great deal of caution. But it’s a godsend to those who have no other options.
It will be interesting to see how this might change in the future.

Jump to this post

Here’s another article on another novel stem cell transplant treatment -

Stem Cell Transplant Seen as Major Type 1 Diabetes Advance
https://www.medscape.com/viewarticle/961696

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Jan 6, 2022
In reply to @mtoyne2021 "Yes, this is what the doc said. We are hopeful! Waiting to do bloodwork now. Thank..." + (show)
@mtoyne2021

Yes, this is what the doc said. We are hopeful! Waiting to do bloodwork now. Thank you so much.

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Good morning, I just wanted to drop in to see how your daughter is doing since we last spoke. We’ve had some private conversations and I’m hoping she’s had a positive outcome to her concerns!

Has she had her consolidation chemo yet? Is she still on track for her Stem Cell Transplant in a couple of weeks?
I know this is a really stressful time arranging for all the lodging and details for having to be away from home for so many months. Is there anything I can help you with or any questions you or our daughter might have about the transplant?

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 24, 2021
In reply to @loribmt "This is fantastic news, Theresa. Thank your for sharing this article! I know BMT is also..." + (show)
@loribmt

This is fantastic news, Theresa. Thank your for sharing this article!
I know BMT is also now being considered more frequently for MS and other auto immune diseases, since those are caused by the our own immune systems attacking our body, By having an entirely new immune system, the old auto-immune response disappears with the conditioning chemo before transplant.
However, the procedure is extremely taxing on the body, not easily tolerated and comes with its own set of issues and side effects At this point it’s considered only with a great deal of caution. But it’s a godsend to those who have no other options.
It will be interesting to see how this might change in the future.

Jump to this post

Hi @loribmt

I appreciate that extra information about BMT. That is good news for people who have no other alternatives for dealing with the health issues surrounding autoimmune disorders. Given how taxing BMT is on the body, I'm wondering how long it took you to recover from your BMT procedure.

I'm looking forward to hearing more about this!

REPLY
Mentor
Lori, Volunteer Mentor | @loribmt | Dec 24, 2021
In reply to @hopeful33250 "While most of the posts in this discussion group are related to a cancer diagnosis, I..." + (show)
@hopeful33250

While most of the posts in this discussion group are related to a cancer diagnosis, I read a Mayo Clinic article that explains a new use for bone marrow transplants. This relates to a rather rare neurological order. Take a moment to read this article,

- Research into rare neurological disorder gives Lisa Miller a new lease on life https://newsnetwork.mayoclinic.org/discussion/research-into-rare-neurological-disorder-gives-lisa-miller-a-new-lease-on-life/

Jump to this post

This is fantastic news, Theresa. Thank your for sharing this article!
I know BMT is also now being considered more frequently for MS and other auto immune diseases, since those are caused by the our own immune systems attacking our body, By having an entirely new immune system, the old auto-immune response disappears with the conditioning chemo before transplant.
However, the procedure is extremely taxing on the body, not easily tolerated and comes with its own set of issues and side effects At this point it’s considered only with a great deal of caution. But it’s a godsend to those who have no other options.
It will be interesting to see how this might change in the future.

REPLY
2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 24, 2021

While most of the posts in this discussion group are related to a cancer diagnosis, I read a Mayo Clinic article that explains a new use for bone marrow transplants. This relates to a rather rare neurological order. Take a moment to read this article,

- Research into rare neurological disorder gives Lisa Miller a new lease on life https://newsnetwork.mayoclinic.org/discussion/research-into-rare-neurological-disorder-gives-lisa-miller-a-new-lease-on-life/

REPLY
1 reply
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