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

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!

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?

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.

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.

clareq- I hope todays visit eases your mind on your BMT. More what will be planned just for you is helpful.

I am day 34 after transplant. I had my 1st bone marrow biopsy Friday after transplant. My 3rd overall. I found out here that the next test is at 100 days. That is good. At this one they take the marrow and bit of bone and check what residual of my original "factory installed cells" remain. Wow. Tuesday is my next blood test. The marrow results may not be in yet.
I have a condo with a patio. Two rose bushes, geraniums and a whole lot of succulents. My brother has been taking care.

Bone cancer will need Stem cell replacement

Hi Shannon360 Welcome to Connect. You just gained a new family here in the forum. Many of us have had leukemia or some other medical condition that has required us to have a bone marrow transplant. We have tons of information for you and have your back when it comes to support, encouragement and hope!

Could you tell me a little more about what you’re going through?
What type of leukemia do you have? Are you in treatment now? How soon will you require a stem cell transplant?

Morning all! I am 36 days past transplant. My blood numbers are going up. Red a bit low but white and platelets good. I am though having kidney issues. AKT? I forgot the numbers. Yesterday and today, I am receiving hydration. 2 hours yesterday and 4 hours today!! My kidneys likely are not loving the drugs!!!!

Hi Kat, good news seeing those blood numbers creeping up! Your new marrow is busy doing what it’s supposed to do!

Yes’m, some of those meds can be pretty rough on the kidneys, especially the Tacrolimus if you’re on that. I guess I never asked. Is that the name of your anti-rejection med? Tacrolimus can change the blood flow to the kidneys, restricting its ability to perform at normal capacity. It usually corrects over time as you taper from the drug.

The combination of some meds can change the processing time of other medications, especially the Tacro. For instance, I was on infusions of anti-fungal daily for about 1.5 months. When I was switched over to oral Posaconazole, as predicted by my doctor, the amount of tacro in my body was elevated because of that drug. I went into acute kidney failure which was quickly reversed with a reduction of tacro dosages and fluids. It can take some tweaking to get percentages of meds at just the right proportions. You may experience some fluctuations during the next few months…all part of the process.
I’d say you’re doing really well with all of this and making great progress! I love all your little updates! Thank you for checking in. Your minions are hard at work…😅

Lori,

I am on Tacrolimus. Tonight, I asked my RN who actually gave me Hydration in the VAD area, about the kidneys and hydration. He suggestion drinking the water slower all day to allow adsorption and not quick elimination. Funny but sad that the only place for my 4pm hydration is the VAD area where i get my blood done. Kind group dawn there.
I am on an anti-fungal infusion daily. Thank you so much for the update!!! I will have another blood test on Friday, so my kidneys will tell their story. I will drink my water tomorrow. You are the best!