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

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. ☺️

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

@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

@davi0937
Hello!
I’m sorry you’re dealing with this. Hope you are doing well and have a great medical team and loved ones supporting you.

My husband was diagnosed with AML (believed to be secondary to previous cancer treatment) with MECOM rearrangement and deletion of chromosome 7.

Wishing you all the best.

Mary

@mary612 - I’m sorry to be nosey but what was his rare mutation? I have Myelofibrosis with MPL as the driver- only 9% Myelofibrosis is MPL and with a SRSF2 mutation- very rare. Thank you

Hi @mary612! This is really wonderful news to know Dane is doing so well. Ugh, I don’t envy him the monthly infusions but I think the light is at the end of the tunnel and it’s not a train this time! ☺️ Dane is so close to the 2 year point and from everything I’ve been told, by several oncologists, along with my transplant doctor, once we get past the 22 month point the odds of a relapse drop dramatically. So, armed with those stats, Dane is definitely nearing completion!

Life is a roller coaster ride, no matter if we’re going through some medical drama or not! So we have to enjoy that ride and get through even the scary times! Your travel plans will be some of the highlights along with meeting your new little granddaughter in Paris! The cruise along the Maine coast sounds fabulous! These ARE the payback moments for all of what Dane (and you) have endured the past two years. My husband and I never stop being out and about, traveling, dining, etc. But it’s important to continue to use caution. You’re right about the masking, hand washing, hand sanitizer when you can’t wash and just using common sense.

This excellent update has me smiling inside. I remember our initial conversations and it was a long, rough road ahead! How lovely and joyous to be nearing the end of treatment and onto the future! Hugs indeed! 🥰

Hello @loribmt !
So good to connect with you again! We are thrilled you also continue to feel good and do amazing things here for so many of us!
Dane completed 19 cycles of maintenance treatment in March. He is at the point where his veins are irritated from the monthly, week long infusions, and he is tired of feeling nauseated for a week to ten days per month. It’s been a lot. He continues to be in full remission (MRD negative), thank God. Strong chimerism and all labs have been very stable. He has great energy (he walked 7 miles yesterday!) but the maintenance treatment is taking its toll. The docs continue to remind us they have no large scale studies to confirm that the maintenance treatment is doing more good than potential harm. They remind us that he had a very high risk mutation and it is rare to boot. His doc has one other patient, a young woman, who had the same mutation, who did not have the option of maintenance treatment 6 years ago and she is doing well. It’s a gamble that Dane continues to wrestle with. They recommended 24 cycles (MD Anderson and Northwestern) so he’s close. But he may not go through with all of them. As you can imagine, we spend many hours discussing this!
He’s also dealt with RSV in January and completely recovered, again thankfully. Just this week he came down with a mild case of human pneumovirus while traveling to Florida (something they swab for when you present with a cough) and the have him on antibiotics just to be safe. He’s doing well and his immune system seems to be working well. He wears a mask in any crowds and he avoids crowds when he can.
It’s very exciting to get closer to his 2 year anniversary. He is planning a fishing trip to Alaska with his son in June. We have a new grand daughter who was just born in Paris! Our grandsons are growing fast and yes throne Ben just after Dane’s transplant will be 2 years old! I’ll go meet my new granddaughter at the end of this month in Paris, exciting!

We are considering taking a cruise along the Maine coast in August on a very small ship…. well before cold and flu season. The docs remind us that he didn’t go through all this treatment not to live his life so they tell him he can travel while also being careful (masking and hand washing).
So the roller coaster ride of life continues!
Thank you for being on this ride with us. It helps so much, especially when you don’t feel alone on this sometimes bumpy ride.
Sending big hugs!
Mary and Dane

@g4c

Thank you. I have a video visit on the 24th, That is cruddy about the overload of steroids side effects.
Together we can keep each other informed and add some hope to each others days.

@mary612

Wonderful news!! I am grateful for myself and for you!! This wonderful group reminds all of us that together we can walk through anything. My donor is from across the seas too. I am hoping for one day to meet him. I look forward to June 12th to wish Dane a Happy 2nd.

Hi @mary612 and Dane! You two didn’t escape unnoticed. LOL. You’ve been on my mind a lot lately and I meant to write a message to see how everything is going! The day starts with good intentions and then…off my brain goes in another direction! 😂
I hope everything is going well for both of you and life has resumed a normal rhythm. And your little grandson is coming up on his 2nd birthday! You had so much excitement 2 years ago around this time!
So, how IS Dane feeling? Is he still in treatment maintenance meds?