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

@mary612 thank you! It’s such a rare blood cancer - so I try to find some type of community to share experiences with. I really appreciate your response and am glad things are well with your husband. I’m in Minnesota and am grateful for the wonderful team at Mayo. Best wishes- Betsy

Everyone,

I want to start by saying thank you all. I have been in Connect for a few months reading since I was told I need a BMT for Myelofibrosis due to a JAK2v617f mutation. “Listening in” on the BMT group has provided an enormous amount of information on the process. I feel blessed to have found this discussion.

My short story (rereading before posting it really is not as short as I intended☺️) is a new doctor basic health checkup in December 2024 resulted in a call from the doctors office saying go to the emergency room right now. I had not been getting checkups for some time due being fully invested in taking care of someone else’s health (which I do not regret). The man(Jim) I was dating at the time met me at the hospital and we spent 11 hours waiting and me being tested all to be sent home with we don’t know what is wrong but you need to go to a blood oncologist. During the tests they kept asking about all the symptoms I should be showing - none at that time. The blood oncologist said just wait and see what happens with no interest in figuring it out. At lunch my best friend (Judy - who flew in for that appointment), and Jim, and I decided that I would have to find a different doctor and Judy said go to Mayo. We all had some travel planned (Judy and I want to Italy and Jim and his brother went to CA). Upon return, Jim proposed, we got married with the promise that I would contact Mayo. We went on our honeymoon for 4 months in another state renovating the house I used to live in to get it ready to sell. I called Mayo to find out which location I should self refer to (isn’t that fun) and was told Rochester. My Dr there did a BMB and they took 21 vials of blood for testing (I said yes immediately to the research study group using my blood and bone marrow). Shazam I have myelofibrosis.

In December 2025, I was told I am a great candidate for BMT as without one, my life expectancy is about 30% likelihood within 4 years of diagnosis, but my overall health is good. This January we signed up and the BMT Dr has found 2 - 10/10 matches here in the US who are young and healthy. I have been on Jakafi for a little over a month trying to shrink my spleen for the BMT that is supposed to happen mid summer.

My transplant Dr told me in our last zoom that he wants me to gain weight but as soon as my weight goes up more than a couple pound my mind and my body rebels. I have fought being overweight all my life and during Covid I was finally able to bring my weight down to my high school weight (where I am still) and according to the standard weight tables I am still over my ideal weight. My question is how much weight is “typically” lost with BMT for MF?

I have also wondered about what kind of damage fibrosis does to bone health and ability of the new stem cells to have a good home.

Thanks again to all of the amazing contributors in this group.
Lorie

Hi @lorieliebrock It looks like everything is falling into place with your upcoming BMT! Having 2 10/10 matches for a donor is excellent. My 20 year old donor was from the US as well, and ‘he’ has served me well for the past 7 years 😂.

As for how much weight you might lose, of course that varies for everyone. From the time I started treatment for AML up to my transplant date (4 months) I had lost about 40 pounds. Before being diagnosed, I had been fluffy with extra menopause pounds for years, but even a 40 pound loss was significant. The loss was attributed to the cancer, which is a calorie eater and the chemo. However, before my transplant, which would be 2 months away, my doctor wanted me to gain back at least 15 pounds. I struggled! I had no taste buds and was nauseated all the time. But I managed to gain 12 and my BMT doctor felt that was ok.

After transplant, well, let’s say, I certainly got into my skinny girl jeans. I lost that 12 pounds plus probably 10 more. That elicited comments from my team, like “Get that girl a cheeezburger!” LOL.
The first few weeks being the challenging time when you don’t feel like eating due to some nausea, fatigue, etc. You’ll be encouraged to eat proteins, protein shakes, and CALORIES. They don’t care how you get them. The key is calories and protein if you can! So my husband found Lactaid ice cream! It was what finally helped put meat on my bones…he made smoothies with that as a base, I ate it in cones, in a dish…The Salted butterscotch was excellent and being lactose free it doesn’t bother the gut.

Your other question about the current damage the fibrosis does to the marrow and how that will impact the transplant. You’ll be receiving preconditioning chemo which will clean out your marrow, ensuring remaining cancer cells are gone and it is a chance for a remodeling of the marrow. The day after the last chemo day, there is a day of rest and fluid flushing. Then day Zero is transplant day. The newly harvested cells will be infused via your port, just like a transfusion. Takes about 15-30 minutes. Pretty anticlimactic.
The cells will circulate in your blood stream tumbling along the walls of your veins until they find these little ‘magic’ portals into the bone. (Pores really). Anyway, once the cells nestle into the bones, (engraftment) they begin to mature into functional blood cells and become your new immune system. It’s such an amazing process!

Once engraftment occurs, healing and recovery begins in earnest. At that point generally you’ll start incrementally feeling better daily, your strength and endurance will pick up and you’ll feel more like eating.

So, between now and transplant it would be helpful to put on a few pounds. I know you’ve struggled to lose the weight in the past and it feels counterintuitive and off-putting to intentionally gain weight again. From my experience, those extra pounds will be lost! But for the time being, they are a safety net for the calorie deficit to come. So this is one time you can splurge on calories. It doesn’t mean you’re retreating into past negative eating habits. Trust me. Those will abruptly change with the transplant. So you’ll be starting fresh and can be mindful of starting a new healthy eating plan. But for now, it’s time to add a little fluff. ☺️

@loribmt

I do not think we talked about weight. Why, because i weighed about 172 or so loosing 28 from breast cancer. I must have been right on target!! Then i though, because at City of Hope you stay on the transplant floor, you get the kitchen. As you said, i found items to eat and after 2 weeks i could really make choices. I had favorites for side, but the main menu changed. The food was delicious. I am not a smoothy gal, but they had a few protein ones i would get.
I love your messages. Lorie need only come back close to BMT day, and the actual transplant will be made easier.

Lori, as to me, my blood as of one year last year showed my chimerism i think at a high number, but my A+ blood was still present. I have asked the office to check April 24th at my next visit, as I am concerned if at 2 years i am not 0. I did read you can have not 100 % chimerism.

@katgob
How tall are you? I am right at 170 now so maybe I am right where I should be… I am 5’8”.
Thanks for all of your inspiring posts.
Lorie

@loribmt

Hi Lori,

In July 2024 I was diagnosed with Multiple Myeloma standard risk after blood tests and bone marrow biopsy was done. Thank God my cytogenetics were normal.

I went through induction with the 4 drug treatment- DVDT followed by mobilisation ( harvesting of my own healthy stem cells) and eventually autologous stem cell transplant in December 2024.

I consider myself blessed to be selected as a suitable candidate for home transplant so my recovery was very comfortable in my own home after the transplant was done in a few hours at the hospital.
Ever since 2 months starting treatment I was already in very good partial remission.

My PET scan results 3 mths after ASCT showed that my bone lesions have all metabolically resolved. Praise the Lord.
My bloodworks also confirmed that any abnormal lamda light chains and monoclonal bands previously present can no longer be seen.

I took velcade as maintenance for a year. Then stopped because I developed carpal tunnel syndrome and I do suspect velcade had a role to play. Thank God though that ever since wearing nightly wrist splints recommended by the Hand surgeon, I no longer have any symptoms.

Would just ask if anyone else with MM diagnosis post transplant went through with long term maintenance and how are your thoughts and experiences? Im not keen on continuing maintenance but at the same time would want to remain in remission as long as possible.
Have also been colouring my hair with henna ever since diagnosis. Anyone resumed salon hair dyes ammonia free? Is it alright to do so?

Hi @jcctsg It’s really rare to be able to actually go home, away from a hosptial setting, immediately after a stem cell transplant, even an autologous transplant using your own cells. But I can sure appreciate how lovely that felt to be in your own bed and familiar surroundings! ☺️ Did you live within an hour of the clinic where you had the procedure?

Most of the conversations in this particular discussion are with members who have had an allogenic transplant (bone marrow transplant) using donor cells. So our stories of recovery and use of maintainence drugs for MM will be a little different than what you’ve experienced.

This discussion by @jstpeachey has conversations with other ASCT members. They may be able to shed more light on the maintenance meds they’re using and other suggestions.

My autologous stem cell transpant journey at Mayo Phoenix
https://connect.mayoclinic.org/discussion/my-autologous-stem-cell-transplant-journey-mayo-phoenix/
Hair coloring after chemo/transplants is on the minds of other members too! Here’s a link to the search results:
https://connect.mayoclinic.org/search/
Did you lose your hair during your MM treatment or after the ASCT? Did you notice your hair changed texture at all?

My dad was dx with MDS. He’s 79, is bone marrow and option?

Hi @bella2b With your dad being 79, a bone marrow transplant (BMT) for his MDS diagnosis would probably not be offered as a treatment option. While there is no exact age cut off it seems to be around 75-ish if the patient is in excellent health with no other co-morbidities. But that would be a discussion for you and your dad to have with his doctors in the future.

The reason being, as we age, the body’s ability to process and eliminate drugs/medications decrease. With the BMT there are intensive preconditioning protocol which can be pretty taxing to the body and also quite a few drugs taken post transplant for several months to years for some patients.

If your dad was just diagnosed, there are a number of treatment options available for him which may help slow the progression of the disease or ease many of the symptoms. So those would be the first line treatments his doctors would most likely suggest.

Here’s a list of discussions in the forum with other members who have been diagnosied with myelodyplastic syndromes - (MDS) Please feel free to jump into any conversation that might be relevant and ask questions.
https://connect.mayoclinic.org/search/
There are different subtypes of MDS which can influence the type of treatment. A quick tutorial from Mayo: https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/symptoms-causes/syc-20366977

Was your dad having symptoms that led to his diagnosis? Has his doctor discussed treatment options?

@loribmt It came on suddenly however I am not sure how long he was truly having symptoms. He brushes everything off always.
We are still waiting to know the specific sub type but the doctors where he is at almost made it sound like there’s not a lot to do. It’s also a very unknowledgeable hospital. Thank you for your reply