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

Thank you Lori—
As much as it pains me I have read that gardening will be out of the question for some time and need to be cautious the rest of my life. That is a tough blow because aside from my family— gardening is the joy of my life. Even being on Hydrea and Jakafi, I experienced fungal infections so I can understand why it’s basically prohibited.

I will be having my first meeting with the transplant team this Monday, May 13th. They had sent an initial packet of forms but as I am already a patient at UofM it wasn’t too much. I’m certain there will be more.

I’m sure many of my questions/doubts will be addressed at this meeting. As I said, this is all happening quickly. I’ve wanted a transplant since my early ET diagnosis 12 years ago but now that I’ve progressed to warrant the transplant it’s a bit daunting. I want to be brave for my husband and family so they won’t fret too much.

soonerfan.
Thank you for posting. I'm at City of Hope in California. Who knew i would come across Lori in this Mayo Connects site and find the extra support i needed to walk through my transplant. I found out with a Bone Marrow Biopsy I had MDS in October of 2023, went in the "Be a Match" registry and by December the Dr said they had matches. In January, they had one donor picked and in March I found out that with a caregiver found, April 2nd was the start of my conditioning, April 9th is Day 0, my new Birthday.
I have some neuropathy on the bottom of my feet, I do know the transplant teams want to help with side effects.

Good morning. I expected you’d be having an allogenic transplant but didn’t want to assume anything. 😉. I think you’re a prime candidate for a transplant considering your health and your age. I was 65 at the time and up to 3 weeks before the diagnosis with AML I had been super healthy so the transplant was a no-brainer.

The donor program is amazing. The procurement process scans globally for a match. My donor was a healthy 20 year old male from the US. But I have several friends, whom I’ve met along this journey, with donors from Europe. So hopefully you get a match soon so you can move forward.

A work of caution about gardening, especially within the first year or so after transplant. There is high risk of fungal infections, sometimes fatal. I’m an avid gardener so it was tough when I was instructed to not even pull an errant weed…which is always so tempting! Wear an N-95 mask anytime you’re working with dirt…but even then, ask your team for instructions. At 5 years post transplant, I still wear a mask while working in the garden. Even though we’re given a new immune system with the transplant, it will never be has robust as our original factory installed model. 😉 So we make adaptations for our new life. It’s all good!
Keep me posted! What’s your timeline?

Hah, sexy compression socks! 😅 My hospital issue socks almost made me cry, they were so ugly! I quickly got online and order some cute replacements. Emotional crisis averted!
But the socks do help with the swelling and yes, there can be tingling involved with chemo. For most of us it passes a few weeks after the chemo sessions are over. For a few, there can be lingering neuropathy. Just keep on walking, gentle exercising, drinking plenty of water to flush the body. That seemed to make a huge difference in my recovery.

Let your oncologist’s office know about your swelling in the feet and ankles though. It’s not uncommon and usually it’s not a big deal unless it’s pervasive. But it’s important for your doctor to be aware of your reaction to the meds.
Glad to hear you’re starting to feel human! Just in time for the next round, eh? Hang in there!

I have finished my first round. On to the first session of the second round. Looking for positive light chains today.( well lower anyways)😊. I started feeling a little more human. In fact felt great Monday!
Hey on a side note did/does any one have the finger and toe tingles with their chemo? My feet and ankles swelled up, kinda scared me. Started wearing my sexy compression socks. LOL!
Thank you for checking on me.

Thank you for your quick reply Lori! I will be having an Allogenic transplant. I will be unable to use my siblings because of age and disease. I am 62 years old. My doctor says I am young and in good health (which I chuckled at) and makes me a good candidate for the transplant. She assures me that they look all over the world to find the best match and one will be found. My hemoglobin is very low which makes my love of gardening difficult but I still go out to the garden every day to do something. It makes me feel better. Knowing I will be unable to garden for a few months is disappointing but of course worth it.

Hi @clareaq I know this is all very and abrupt for you. You weren’t anticipating having a bone marrow transplant (stem cell transplant). Having yours at this earlier stage in your blood condition, before there is a progressive situation, is a good thing.

There is a ton of information from myself and other members that will help you through all of the unfamiliar territory. You’ll be learning quite a bit at your meeting with the transplant team and I’m sure it will feel overwhelming! Never fear, I’m here to help clarify things for you. There is no question too large or too small!

Each clinic has its own protocol but generally you’ll need to have a dedicated caregiver 24/7 for about 100 days and to remain within 30 minutes of the clinic for the same 100 days. Some clinics have transplants as an outpatient procedure while others require a several weeks as an in-patient before being released to a recovery location.

Do you know if you’ll be having a transplant using your own cells or will you be required to have a donor’s cells?

Lori,
Thank you for replying. At my work, I do not have disability. Following my cancer diagnosis, I added it a year or so ago through a plan that lets us add specialty coverage. It is not full coverage, but it was just in case. I did not get the extra cancer policy when i could a few years go. I need to wait a few years.
I am going to work from home whether it is all day or a number of hours. I have many appointments over the next number of months, and I want my sick hours to be used for a while. It will just be working it out with my office.
Just seeing what i can do, I need to meet with my HR/Diversity director first. This takes time is so right.......I am going outside to take small walks. Sitting outside for fresh air. Simply reading more. My caregiver's house is not mine. That is still a big adjustment.
Tomorrow is my 30-day bone marrow biopsy. Looking forward to the truth it will tell. My 3rd of many BMB.

Hi Kat. I was retired at the time of my transplant so returning to the workplace wasn’t on my radar. I remember thinking around the 6 month point that if I were working full time it would have been a challenge because of the fatigue at the end of the day. I’d feel like a puppy with bursts of energy. Then I’d overdo because I felt so amazingly healthy. Paid for it the next couple of days with fatigue…two steps forward, three back. This takes time to recover…not a race, it’s a marathon. But don’t go canceling plans for that March retreat to hastily.
Perhaps if you’re feeling up to the challenge in 6 months you can start working from home?

You’re right, bone marrow transplants aren’t for sissies. 😉 But you’re doing great and have the right stuff to keep pushing forward! You’ll feel like Wonder Woman when you’re past the worst of this. The first 2 months were the most difficult. You’re moving right along, so hang in there!

Good morning, @soonerfan. Just checking in to see how you’re doing. Did you finish your first round of treatment?