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

It certainly is helpful to hear your story. Am hopeful to get a date soon but also nervous about the whole procedure and especially the challenges from the chemo. Also worry about the lack of immunity afterwards. Because I have myeloma I now have bone damage that I hope has some resolution as well. Just hoping I am in remission and this can move forward. Hope I am as lucky as you and end up with good stem cell recovery in two days rather than four!!!

A blanket from home is a must! I brought my down comforter and memory foam pillow for my long hospital stays for chemo and transplant.

Thanks Lori! I hope my transplant story is helpful to readers. During our stay in Rochester, having comfortable loose fitting clothes is a plus. I also enjoyed my comfortable slip on shoes! One more thing....an extra warm blanket is nice to have!

Well am hopeful. She certainly was prepared. Really hope they can get enough stem cells quickly and interesting that ice chips would help with the mouth issues. Guess fatigue is always an issue. I did vegan all last year but have gone back to protein already. Sounds like what I will need to do. She said released after 3 weeks so if all goes well it might not be 6 weeks? Wish I were coming up on my 100 days. Guess sometime in October if all goes well! Just wish I had dates!

Hi @countrygirlusa! I’m so happy you’re on the other side of transplant and that everything went really well! The process for collection of cells was interesting to read about. My transplant involved an unrelated donor so that generous guy had to go through the collection process instead of me. I only saw the end results. 😉

No matter how well our transplant team prepares us for the journey, it really helps to have someone who has experienced it first hand to be able to give that unique perspective.
On that note, I’d like to introduce @tml to you. She’s about to go through the same process, an auto transplant, coming up hopefully in July. I know she’ll be reassured by your positive experience!
Thank you for sharing your story!
Knowing you had to travel and remain in Rochester for 6 weeks, what was one thing you brought along with you that you found most valuable during your stay?

I would like to share my BMT story. I had an autologous stem cell transplant 8 weeks ago this week. First, I will give the story of my diagnosis. It began with a colonoscopy. The pathology report on a polyp gave an incidental finding of amyloid, a word I had never seen before. I did a google search and found amyloidosis is a blood disorder. A trip to Mayo Clinic-Rochester and a bone marrow biopsy confirmed I did indeed have amyloidosis and a stem cell transplant was offered to me. We returned to Rochester the last week of March for testing to see if I was fit for a transplant and received the go ahead to proceed with the plan which was for an autologous stem cell transplant. This means my own stem cells were used and not donor cells.

The process involved getting shots over 4 days to stimulate my bone marrow to make extra stem cells. I received a chest port during a quick surgical procedure so they could access my blood stream that way and not through pokes in my arms. No more "ouches"! Then the stem cell collection began in a process called apheresis. I was hooked up to the machine for 5 hours at a time through the port. It was actually quite interesting to watch the process as my blood left my body and went into the machine which reminded me of a dialysis machine. Then my blood came back into me minus the stem cells. The goal was to collect enough stem cells for 2 stem cell transplants and I had enough collected in 2 days. Some people need 4 or more days to collect what they need with the cells then bagged and frozen until needed. I had no ill effects from the apheresis except for a slight tingling in my lips during the process. They encouraged me to eat something and I had a bag of snacks at the ready!

A few days later I received high dose chemo over 2 days. Each IV bag of chemo took approximately an hour to be infused. While I was receiving it, I did my best to keep my mouth cold with ice chips they gave me. I had read that keeping the mouth cold causes a vasoconstriction of the blood vessels and helps prevent mouth sores. It worked for me - no mouth sores! As an aside, I had been to the dentist 2 months earlier and he prescribed sensitive tooth paste to use in the weeks leading up to my BMT to help with cold sensitivity. It helped, and although a bit unpleasant the ice chips were doable! Then, the very next day I got my stem cells infused. They thawed 2 bags of cells out in a bath of warm water and hooked them up on the IV pole. They were a beautiful creamy color!

I had some side effects from the chemo but the Mayo staff had solutions for every problem. Nausea, vomiting, and diarrhea would come and go. I checked in every day at Station 94 and received IV fluids as needed. I was weak and needed a wheelchair so we borrowed one of the many that seem to be everywhere you look. We stayed close by and used the underground tunnel to go back and forth from our extended stay hotel to the Methodist Campus where my appointments were. The tunnel system is climate controlled, carpeted, and well-lit. A nice plus if you happen to be in Rochester during the sometimes harsh winter months!

I had no major complications and was treated as an out patient during our stay in Rochester. I was released to come home 3 weeks after the transplant as my blood counts had recovered to a sufficient level. I had to deal with fatigue, lack of appetite, and some minor leg swelling for a couple of weeks after getting home. I was on a mostly plant based diet before my BMT but started to eat more protein which has helped immensely with my fatigue. I don't go out of the house very much yet due to my weakened immune system but my energy level has retuned to the point I can do all the household chores again. I was able to get Evusheld which gives some protection if I'm exposed to Covid.

I will have my 100 day check-up in July. I feel fortunate that medicine can offer treatments such as stem cell transplants which can offer not only remission of certain diseases, but even cures for other diseases. If a BMT is in your future, my advise is to be kind to yourself. It takes time to recover and everyone's experience will be different. Get plenty of rest, eat well, and stay positive! It really does help with your recovery!! Good Luck!!!

Paraprotein .9
Kappa 1.73
Lamba .17
Ratio 10.18

Revlimid, dara and carfilzomid instead of valcade I was on pre SCT

Oh golly, I’m sorry to hear this attempt didn’t work out. That’s disappointing and I’m sure very frustrating for you. What’s the treatment plan going forward?

2/23/22 SCT didn't work.