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

Profile picture for katgob
katgob | @katgob | Jul 23 11:25am
In reply to @lorieliebrock "@loribmt Lori, My transplant has pretty well followed your timeline. My first signs that engraftment was..." + (show)
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@loribmt
Lori,
My transplant has pretty well followed your timeline. My first signs that engraftment was working was on day 13 and yesterday my platelets jumped from 21 to 47. Eating has been a challenge because everything has tasted terrible but I am working on that so I can get back a little energy. Thanks for the insights.

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@lorieliebrock
Excellent. I got to be in the hospital so i loved the daily updates on the board. The nurses and drs visiting daily were just as excited for the engraftment to start. I had much fatigue the first couple weeks, but then i did my best to walk the floor around and around. I could only dream of Lori's experience in staying offsite. Not having to drag my "IV pole" everywhere i went.
Eating is tough. I found foods I could eat the first few weeks and kept eating them. The "room service" at COH had delicious food so weeks 3-4 i had some tasty eats.

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katgob | @katgob | Jul 31 10:58pm

Back again. Today i received my first MMR. Back of arm. Imagine my delight when the nurse and 2 student nurse helped her. The main nurse told the girls the needle needs a tight skin place for the needle to go in smoothly. She was saying i had loose skin back there. I dare say, I need to life weights.

My Dr. laughed when i told him Guardant Reveal was not sure what do about my sample as I marked email but i had X/Y chromosomes. He is still not concerned about my A+ blood. He may get that blood test to check my type Aug 28th. All blood numbers remain steady, but i did not drink enough water. I knew it.
So far so good.

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ajdmyers | @ajdmyers | Aug 5 7:32pm

Hello everyone! I've been "lurking" here for many months and have appreciated reading about the experiences of others! After I chimed in on another thread @loribmt invited me to introduce myself, so here goes:

I'm 53 and live in metro Des Moines (IA). Just over a year ago (July 16, 2025), I was diagnosed with B-Cell Acute Lymphoblastic Leukemia (B-cell ALL). My local HemOnc gave me the choice of 3 specialty clinics - Univ of Nebraska, Univ of Iowa, or the Mayo Clinic. I'd been a patient at Mayo several years earlier when living in MN so that was the natural choice, even though it was the furthest from home. From late July to early December, I went through 4 cycles of chemotherapy (hyper-CVAD), and then a cycle of Blincyto (monoclonal antibodies). I didn't reach remission until the 2nd chemo cycle. This and some genetic mutations put me in a higher-risk category and we learned that a BMT was my best path to achieve long-term remission.

My transplant day was January 21, 2026. My unrelated donor was a very very good match - 12/12 - living somewhere in Poland! I'm not sure why, but "rebirth day" language didn't sit well with me. So my husband and I opted to call January 21 my "Launch Day" - the launch of a new season of healing and renewal and cancer-free life! My nurses that day were fantastic. My cells weren't ready until the evening, and while we waited one of the CNAs drew a rocket ship on my white-board. 🙂 Because the infusion happened around 7:30, I stayed overnight in the hospital.

During our 100+ days in Rochester, we opted to stay at Gift of Life, which was a good fit for us. I appreciated the convenience of on-site bloodwork and the shuttle. My husband was my full-time caregiver (a circumstance made possible because he was between jobs). He already does all the cooking, so that was no big deal. It was weird for me to have him doing my meds, but I just didn't have the brainpower for it. He was pretty engaged with the GOL community and appreciated getting to know other patients and caregivers. I mostly kept to myself and slept a LOT!

I was hospitalized twice post-transplant. First for chemo on Day 4/5 (a protocol to prevent GVHD) and again a couple of weeks later for a UTI and fever. I struggled with many of the typical things - poor appetite, mouth pain, low-grade GI, and fatigue. The worst issue for me was nausea. I was on multiple layers of scheduled anti-emetics until around day 60 and I lost 30# during the first 100 days. Many days I subsisted on Boost and canned peaches with vanilla Greek yogurt!

On the whole, however, my health during and after the BMT process has been good. Prior to transplant, I had some time to recover from my initial chemo treatment and I was already taking regular, short walks. I was able to resume those walks around day 20. I didn't have any acute GVHD and weaned off tacrolimus on Day 100. Thus far (Day 196) there are no signs of cGVHD. I feel incredibly fortunate for the ever-evolving protocols and research that make stories like mine possible!! I'm still dealing with some concentration issues and occasional insomnia, but overall I'm quite happy with the quality of my life right now. Grateful!!

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Mentor
Lori, Volunteer Mentor | @loribmt | Aug 6 7:33am
In reply to @ajdmyers "Hello everyone! I've been "lurking" here for many months and have appreciated reading about the experiences..." + (show)
Profile picture for ajdmyers @ajdmyers

Hello everyone! I've been "lurking" here for many months and have appreciated reading about the experiences of others! After I chimed in on another thread @loribmt invited me to introduce myself, so here goes:

I'm 53 and live in metro Des Moines (IA). Just over a year ago (July 16, 2025), I was diagnosed with B-Cell Acute Lymphoblastic Leukemia (B-cell ALL). My local HemOnc gave me the choice of 3 specialty clinics - Univ of Nebraska, Univ of Iowa, or the Mayo Clinic. I'd been a patient at Mayo several years earlier when living in MN so that was the natural choice, even though it was the furthest from home. From late July to early December, I went through 4 cycles of chemotherapy (hyper-CVAD), and then a cycle of Blincyto (monoclonal antibodies). I didn't reach remission until the 2nd chemo cycle. This and some genetic mutations put me in a higher-risk category and we learned that a BMT was my best path to achieve long-term remission.

My transplant day was January 21, 2026. My unrelated donor was a very very good match - 12/12 - living somewhere in Poland! I'm not sure why, but "rebirth day" language didn't sit well with me. So my husband and I opted to call January 21 my "Launch Day" - the launch of a new season of healing and renewal and cancer-free life! My nurses that day were fantastic. My cells weren't ready until the evening, and while we waited one of the CNAs drew a rocket ship on my white-board. 🙂 Because the infusion happened around 7:30, I stayed overnight in the hospital.

During our 100+ days in Rochester, we opted to stay at Gift of Life, which was a good fit for us. I appreciated the convenience of on-site bloodwork and the shuttle. My husband was my full-time caregiver (a circumstance made possible because he was between jobs). He already does all the cooking, so that was no big deal. It was weird for me to have him doing my meds, but I just didn't have the brainpower for it. He was pretty engaged with the GOL community and appreciated getting to know other patients and caregivers. I mostly kept to myself and slept a LOT!

I was hospitalized twice post-transplant. First for chemo on Day 4/5 (a protocol to prevent GVHD) and again a couple of weeks later for a UTI and fever. I struggled with many of the typical things - poor appetite, mouth pain, low-grade GI, and fatigue. The worst issue for me was nausea. I was on multiple layers of scheduled anti-emetics until around day 60 and I lost 30# during the first 100 days. Many days I subsisted on Boost and canned peaches with vanilla Greek yogurt!

On the whole, however, my health during and after the BMT process has been good. Prior to transplant, I had some time to recover from my initial chemo treatment and I was already taking regular, short walks. I was able to resume those walks around day 20. I didn't have any acute GVHD and weaned off tacrolimus on Day 100. Thus far (Day 196) there are no signs of cGVHD. I feel incredibly fortunate for the ever-evolving protocols and research that make stories like mine possible!! I'm still dealing with some concentration issues and occasional insomnia, but overall I'm quite happy with the quality of my life right now. Grateful!!

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Hi @ajdmyers! I’m so happy you came out from lurking behind the scenes to share your story with us! ☺️ Each of us has our unique BMT journey and I think sharing out in Connect can be so helpful and inspirational for anyone about to enter into this next phase of life…a 2nd chance!

Your “Launch Day” metaphor is excellent. It is a launch into a new season of healing and renewal! My husband dubbed me Lori 2.0. LOL. Whatever we chose to call it, we have been offered an amazing gift by our donors. Hopefully some day you may be able to meet your hero.

Thanks again for sharing with all of us, your experience at Mayo-Rochester, the Gift of Life Transplant house and your exemplary recovery! Fantastic!
How frequently do your return to Rochester for a followup?

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katgob | @katgob | 4 hours ago

Well, i checked and see no posts for a while. I posted on another page i had my 2nd MMR. All my blood numbers were right on target. Sadly, It has been super-hot in California and i have what i think is a cold type thing where i am on my way to losing my voice. It happened at 28 years old when my friend and i both got new cars and ran that AC on sll the time like crazy. I have one fan i think has caused it.
What i wanted to add is a cold i did almost have 6 months ago. It never happened. I will never know if my research study that was meant to prevent GVHD did it. So many posts are on AML which is rough and tough.
I get my yearly CT chest scan for my lungs in late October. For today. I need to wear my thigh high compression stocking more. My blood clot is not gone. Eliquis is a help, the stocking helps my body too.

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