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

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!!

@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.

@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.

Hi @lorieliebrock My husband and I were just reflecting on our life 7 years ago this week! We’d relocated to Rochester June 12th 2019 and the 5 days of testing began the 14th. That’s where I coined the phrase, “Being Mayo-naised”. LOL
“Mayo-naised” [Meaning: to experience the immersion into Mayo Clinic’s compassionate and collaborative blender of care and hope”]. My 15 minutes of fame in Google.

So here’s a rundown of what will happen when you get to Rochester. You’ll set up your lodging to make it your home for the next 3 months. I read in your other reply that you have gone down the packing lists. If you don’t have everything, there are grocery stores, Hy-Vee, drug stores, and a mall nearby where your husband can easily grab food, supplies and such. After a few weeks you’ll be up for an adventure out in public and can join him. But for the first couple of weeks, your life will revolve around the clinic.

Ok, here’s my chemo and hospital experience…but to my knowledge the protocol has remained the same because statistics and validation from the health of patients show it works.

You’ll have 25+ appointments in 5 days. Should be in your portal soon! Sounds like a lot but it’s incredibly efficient and you’ll breeze through the day. Pack a little carry bag with water, snacks, ipad, etc. YOU and your caregiver. Because there’s a great deal of time for your caregiver to wait during your appointments. For many, your husband will be with you. But then some are X-rays, or pulmonary tests, etc., where you’ll be involved while your husband waits in the reception room. So plan accordingly.
You’ll have a ton of educational classes along with the tests so you and your husband will be provided notebooks and brochures, etc. You’ll have a tour of the transplant floor, affectionally referred to as Station 94.

A day or so before the chemo starts, you’ll have a little surgery for the Hickman port installation…where you turn into a cyborg. LOL. That’s how I felt! You might be a little tender for the first day or so but you’ll love that port!! So easy to get blood work AND all your chemo and meds get infused into the port so no more feeling like a pincushion all the time!

Chemo day. In my personal experience I had 5 days of chemo. Here was my schedule:
6/22 Day -6 Fludarabine 30 min infusion
6/23 Day -5 “ “ “ “ Out patient
6/24 Day -4 “ “ “ “
6/25 Day -3 Fludarabine 30 min infusion
Melphalan 1 hour infusion
6/26 Day -2. Fludarabine 30 minute infusion -In Patient
Melphalan 1 hour infusion.
6/27 Day -1 Rest Day (Fluids pushed that day)
6/28 Day -0- Transplant Day.
You begin this treatment as outpatient and admitted to the hospital if necessary.

So, outpatient the first 4 days. Then by day 5, I was admitted to the Methodist hospital Station 94. (The transplant floor)
Day 0 is transplant day. It takes about 15-30 minutes? You’ll have 2 nurses with you verifying the donor cells with your ID and they’ll be with you for an hour or so. You’ll have some meds before the transplant. The transplant itself is anticlimactic. The bag hangs like any infusion bag and drips into your port line. Easy peasy. Since my cells arrived later in evening it was about 11:30 pm when I had my transplant. I was discharged the next morning to go to my place of lodging! So much hype leading up to a 20 minute infusion! LOL

Once you’re back ‘home’ in your home away from home, you’ll become increasingly fatigued. So naps will be expected. But I found being an outpatient ideal and I felt I recovered faster being able to move around more, get my own food (that my husband had ready for me) and sleep in the peace and quiet of a home environment. You’ll report to Mayo daily, for labs, any fluids or meds you may need.

The team on 94 is incredible. You’re in amazing hands there.
One thing, you may not see your doctor much during the next month or so until you transition back to general population. Your care will be done by the transplant team. However, your doctor will be behind the scenes calling all the shots!
Ok this was way longer than intended. But it was a fun trip down memory lane for me!

Hi @lorieliebrock Just checking in with you to see how you’re progressing with the preconditioning before your BMT. By my reconning you should be at Day minus 1…a day of rest and pushing fluids before your new Re-birthday tomorrow!
The actually transplant process is pretty anticlimactic considering the amount of anxiety and anticipation before the actual transfusion. But it’s a pretty big deal when you realize this bag of stem cells is a gift for a 2nd chance at life.

When I had my transplant, I thought of those new stem cells initially as little Minions (from the animated movie). But then changed to the idea that these were more like Imperial Storm troopers from Star Wars. LOL…even had Darth Vader’s theme song running through my head often, as these new stem cells were aggressive and defensive. 😂
So name them whatever you want, but they are your gift to a healthy future!
The next week or so you’ll most likely feel more fatigue and possibly nauseated as the effects of the preconditioning meds kick in. The newly infused cells will be circulating throughout your blood stream where they quite miraculously find these special little pores that allow them to enter your bone marrow. There, they will set up ‘housekeeping’ in the marrow. As soon as the stem cells start maturing into neutrophils, red blood cells and platelets at engraftment, you’ll start to feel much better and your recovery should be slow but steady.

So hang in there! I’ll be thinking of you tomorrow! I don’t think I asked before, but is your donor related or was this someone from the global registry?

You might check out Hyatt House. Their suites have a small kitchen. We are in Gift of Life House for the community support but if you want more privacy HH may be a better for you.

@mary612
Hi Mary and Dane! Because I know what you’ve both endured through Dane’s incredible medical adventure, I’m tearing up right along with you this morning. The news of his 100% Chimerism and MRD-neg is fantastic! We become like family here and when there’s good news like yours to share, it encourages all of us! 💕

I’m especially moved with your both hearing “I can see clearly now…” at such a poignant time after Dane’s appointment! Wow, huh? If that’s not a sign…and that song will forever be an underlying theme song in your hearts…the song of liberation! ☺️ Music can be so impactful on multiple levels! I have four songs that highlight 4 memorable times in my odyssey. As soon as I hear any one of them, I instantly recall the moment and milestone.

Dane, you’re a lucky duck for not having any issue with the MMR. I have to say, out of all the vaccinations…and you know how many that entailed…😳…the MMR knocked me on my butt for a couple of days! It’s good to be finished with those!

You brought up such an interesting discussion topic. The PTSD surrounding having not only AML but also the subsequent BMT. Well, actually any medical event can have its share of traumatic recall. It’s a heckuva a lot of emotions to process! Our bodies as well as our minds go through incredible trauma that’s hard to shake. You’re right, Mary, at the time of the event, you don’t have time to process what’s going on. You ride along a roller coaster of emotional highs and lows, with little time for self reflection. It’s like running on autopilot in stress mode for a couple of years! So all of those emotions get buried. Now, with the immediacy and intensity of the past few years behind you, there will be bubbles of trauma occasionally rising to the surface. Don’t be afraid to talk and reflect about what you’ve both been through. It is helpful for incremental healing. I still have moments that strike me out of the blue and it’s been 7 years. In fact this past week, because it was another anniversary of my BMT and journal entries are popping up in my online journal, I think of the enormity of what was endured, survived and overcome finally hit me like a ton of bricks. Had a couple of days where even Dishwasher soap commercials had me crying! ☺️
I looked at my husband, shaking my head, ’How did we even get through this?!” But we did! And you and Dane did and countless other families. We do what’s necessary to survive so that we can have this amazing 2nd chance at life. Ah, Chimeras and their families. Giggle.

Have a lovely holiday! Love and congratulations to you both.