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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 Blood Cancers & Disorders Support Group.

mtoyne2021 | @mtoyne2021 | Nov 19, 2021
In reply to @loribmt "Sometimes with these aggressive cancer like AML it’s better to have an unrelated donor. There is..." + (show)
@loribmt

Sometimes with these aggressive cancer like AML it’s better to have an unrelated donor. There is a certain amount of the graft vs host that is necessary to establish great results! So don’t despair. ☺️

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

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Nov 19, 2021
In reply to @mtoyne2021 "Hi Lori: My 19 yo daughter was diagnosed with AML with t6;9 mutation October 8th, 2021...." + (show)
@mtoyne2021

Hi Lori:
My 19 yo daughter was diagnosed with AML with t6;9 mutation October 8th, 2021. We are scheduled for a biopsy November 19th to determine consolidation chemo regimen. BMT tentatively scheduled for January 2021. We're trying to decide where to live post BMT to stay near Mayo in Rochester. Have not toured any places yet. Are looking into Gift of Life, Hyatt House, and Centerstone. Any advice would be very much appreciated.

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@mtoyne2021, I saw mention of Gift of Life House. I am a liver and kidney transplant recipient. My husband and I lived there for 13 weeks in early 2009 before and after my transplant. It was a perfect match for us since we were far from family and friends. We found it to be a place of hope and compassion and healing. It is clean and welcoming with private bedrooms and bathroom. Patients can also have labs drawn there by an arrangement with Mayo. If I can be of assistance, I'm here.

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mtoyne2021 | @mtoyne2021 | Nov 21, 2021
In reply to @rosemarya "@mtoyne2021, I saw mention of Gift of Life House. I am a liver and kidney transplant..." + (show)
@rosemarya

@mtoyne2021, I saw mention of Gift of Life House. I am a liver and kidney transplant recipient. My husband and I lived there for 13 weeks in early 2009 before and after my transplant. It was a perfect match for us since we were far from family and friends. We found it to be a place of hope and compassion and healing. It is clean and welcoming with private bedrooms and bathroom. Patients can also have labs drawn there by an arrangement with Mayo. If I can be of assistance, I'm here.

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Thank you.

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Mentor
Lori, Volunteer Mentor | @loribmt | Nov 22, 2021
In reply to @loribmt "Sometimes with these aggressive cancer like AML it’s better to have an unrelated donor. There is..." + (show)
@loribmt

Sometimes with these aggressive cancer like AML it’s better to have an unrelated donor. There is a certain amount of the graft vs host that is necessary to establish great results! So don’t despair. ☺️

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Good morning! I just wanted to drop by to see how your daughter is feeling. I’m sure just being home after her long confinement in the hospital is a real morale booster for her. You mentioned she has an upcoming BMBX to check her remission status. Will this one be at Mayo? If so, I’d really suggest asking her team for the option of a sedative. This will be one of many biopsies in her future and she may as well be as comfortable as possible. It’s quick, efficient and she’ll wake up to cookies/crackers and juice with no memory of the procedure.

Don’t hesitate to contact the team via the patient portal. They’re always responsive and dote on us transplant patients. ☺️ Do you or your daughter have any questions about the Consolidation chemo for AML or for the upcoming transplant?

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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/

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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/

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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.

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2 replies
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.

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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!

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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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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.

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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
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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

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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/

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