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

Hi, I have posted before about my husband. We found out last summer he had an issue with his blood work and was very tired. After a bone marrow biopsy at a local hospital that physician sent his results to Mayo since they just accepted them a partnership with them. Local hospital said non Hodgkin lymphoma but this dr didn’t feel it matched his symptoms so biopsy sent to Mayo and MDS-EB 2 with 19-% blasts so off to a local bone marrow specialist. And within 2-3 days he was getting chemo all as an outpatient. He did very well through that until he didn’t. He developed a fever and was very delirious with them and was hospitalized for two weeks and was told he wouldn’t be a candidate for a transplant. Well as I have said before and Lori has heard it he was a guy who worked out every day before all this. So off to PT and she worked wonders and so in Feb 2023 we got a transplant from a most gracious unknown 30 yr old male. I’m not saying it was easy as he also had graph vs host disease and a very bad bout of cdiff that again caused delirious temps. So today as I write this we had a very nice Christmas this year unlike last year. He does have some fungus in his lungs, low sodium levels, blood clot in his groin but platelets going up and alkaline phosphorus going down. But he is walking almost every day or going to his yes Parkinson’s exercise class twice a week. We have had a lot of prayers being answered and so grateful for the second chance. Just love our extended family members at the BMT clinic and hospital. Prayers for the rest of people going through this process. 🙏

Thanks!! It’s a few more days out yet so I’m holding onto this decade as long as I can! 😂 “🎶Hold onto 60s as long as you can…🎶”

Anita, it’s ok to be in the dark about some of the medical issues that may pop up with Alex…that’s why he has doctors. This occurrence with his hip may have nothing to do with his transplant at all. When we go through a life altering event such as a stem cell transplant, it feels natural to correlate every unusual thing that pops with that event. But sometimes things just happen and who knows, they may have taken place anyway. Regardless, we deal with these little events as they come.

Alex is well past the initial critical period of 100 days. So now issues, if any, that may pop up related to his transplant will generally develop slowly without escalating quickly. That was more of a concern in the early days.

I hope everything goes smoothly and no surgery is necessary. It’s not a setback, just a little snag. Please let me know what you found out. ☺️

HAPPY BIRTHDAY !!!!!

Lori,
I'm so happy to hear that you are doing well! I'm afraid I have no answers yet and test results may not be available until Tuesday Jan. 2nd. 🙁 Alex's Orthopedist told him there are two possible outcomes: either it's just infection or "something else" which would require surgery.
This leads me to think it could be a synovial cyst (?) Alex isn't presenting with any other symptoms: no headaches, rash, swelling. I mentioned the possibility of GVH and was told they think that's "highly unlikely". I'm really in the dark on this one.
Anita

Hi @leilab1 There must have been a ‘connection’ between us this morning! I woke up thinking I needed to check with to see how Alex is doing because it had been really quite a while since we’ve spoken. And, boop, here you are!

I’m so happy to hear he’s been doing really well considering all the uncertainty in his earlier days of the transplant. How is his appetite and activity level? Keeping in mind…as I was reminded so many times by my team…this is a marathon, not a race! But with Alex being young, it can be really frustrating not being fully active like he was prior to transplant. It gets better!! Tell him I’m going to be 70 in a few days and feel like I’m 24…seriously! It just takes time! ☺️

This event with his hip isn’t anything I’ve experienced. Has he been doing any extra exertion, exercises, etc., that may have caused inflammation there? Do his doctors feel this is in anyway related to gvhd?

Wishing you and your a family a very happy, Healthy and uneventful New Year!! Lori

Hi There Lori,
Hoping all is well with you and yours!
Haven't spoken with you in awhile because my son Alex was doing well post-BMT. This all changed a few weeks ago when he developed fluid in his right hip joint. He is now hospitalized (again) and awaiting Interventional Radiology to drain fluid. No diagnosis yet. Any info on post-BMT fluid build-up?
Thanks and Happy New Year!
Anita

I have been diagnosed with Multiple Myeloma (MM) since 2019 did Stem Cell Transplant ((SCT)
3 years after I got a relapse in June 2023.
I was recommended immediate treatment with Daratumumab, Velcade, Dexamethasone (DVD).

Daratumumab is extremely expensive as I am an African with no medical insurance. And no insurance company will take me on now.
Back to Lagos, Nigeria I am doing it for half the price which is still extremely expensive. But it’s far better than SCT.
I was informed MM is not curable but treatable.
1. Is bone marrow treatment available in the USA or anywhere in the world now as I will always prefer total cure.
2. Is Daratumumab made for the rich while the poor are allowed to die?
3. Is there any other treatment better than what I am taking now?
4. Is there medicine trials available for me to join?

Good morning! And welcome to the Mayo Clinic. I had my transplant for AML 10 years ago. I know some things have changed and the process has been updated. I was a “guest” of Mayo for 27 glorious days in 2013 during my conditioning chemotherapy. I was running for the door after being in the hospital for almost a month. And I hit the road running after my transplant, recovering at home because Rochester is my also my hometown. Mayo is a wonderful place, filled with caring and compassionate caregivers who live the mission of “the needs of the patient come first”.
I hope your experience will reflect that statement every day. I will be keeping you in my thoughts and prayers. Sending you a snapshot of MN autumn.

Hi @leilab1. Just checking in on Alex…and you! I’m expecting now that he’s home you’re seeing a marked improvement in his overall health. He’s moving past the critical stages of recovery. Hopefully his depression is easing a bit too.

Some of the depression signs early in transplant can be confused with the malaise that comes from not feeling well. As he recovers, Alex may start perking up simply by getting better nutrition, exercise and being in a normal environment.

Your son has endured a huge life altering ordeal. With that comes some mental, emotional and physical changes and he may go through a mourning period for what he’s lost. Everything has changed for him. @alive had a good suggestion about getting a referral to a therapist. My team was always asking if I wanted to see someone. I didn’t feel as though I needed it. But even now, 4 years later, I probably did myself a great disservice by not taking them up on the offer. I occasionally have moments of PTSD and reliving a few of the seamier moments of my odyssey. So your son may benefit from having a few sessions.

Is he getting outside and walking around more?