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

@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.

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.

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!!

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?

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.

April 15,2025 was my Bone Marrow Transplant. I was previously on the AML chemotherapy protocol 7+3 HiDAC regimen. Then I went in for the BMT but the physician drop the ball so many times I felt they were incompetent. For example the BMT doctors do not want you to have chemotherapy a month prior to the BMT due to the fact that they will give you chemotherapy in in hospital prior to BMT. Well my doctor let me come to the pre appointment and then advised me that the donor did not show up for his appointment to donate the stem cells. She never called me and never made arrangements for continued chemotherapy. That day I had to call Dr. Moore at Saint Vincent’s Providence to get in for my chemotherapy. The BMT doctors were incompetent and stupid and did not even care. That was my first red flag. I should have stayed with Dr. Moore at Saint Vincent’s Providence in Oregon because she had a plan to cure me, but instead I listened to that dumb one who said only with a BMT will you be cured. It has been down hill ever since and now I am going to Stanford.

Blood clots take sometime to dissolve but you are doing awesome. Congratulations on your MMR

Hi @tlsorbet. It’s so important when having a BMT to be at a reputable larger hospital where they perform a greater volume of transplants. The experience and knowledge to handle complications, along with having a deeper bench of specialists is crucial. With a great BMT team everything should run like clockwork.

I’m sorry your experience was less than stellar. It sounds like you were able to go ahead with the transplant though. In defense of your doctor, whom you feel is dumb, there are many cases of AML where a bone marrow transplant is still the recommended course of treatment for long-term outcome.
The newer drugs that have been developed to treat AML have good track records but for some of us, it is still necessary for the BMT.

You’re about 16 months post transplant. How are you doing now? How has your recovery been? Any GVHD issues?