Bone Marrow Transplant Success
September 28, 2021 at 9:50 am #55017
Does anyone have a success story regarding post bone marrow transplant? No one seems to post results and it makes one think is it worth it?October 2, 2021 at 11:18 am #55026Richard LinParticipant
Transplant process has evolved over the last few decades with improved outcomes including both efficacy and safety. However, even in successful scenarios, short term (up tp 1-2year) decline in quality of life is expected. It remains the only curative option for MDS but requires a lot of planning, supportive, commitment, and expertise from a transplant center of excellence. LLS could connect you to other patients who had gone through the transplant who either had done well or who had complications so you can get the perspectives of both.October 3, 2021 at 5:12 pm #55028
Thanks so much Richard. I guess everything has it’s pluses and minuses. So decline in quality of life will happen either way. I appreciate your input. Best health to you.October 3, 2021 at 8:05 pm #55029
Last question Richard. What does LLS refer too?October 4, 2021 at 8:39 pm #55033October 4, 2021 at 8:48 pm #55034
LLS.org is the Leukemia & Lymphoma Society. They also have great resources and support.
Search for – Transplantation: Blood and Marrow or support resources.October 7, 2021 at 3:02 am #55040
Thanks Sue for your help on thisOctober 7, 2021 at 9:48 am #55041
You are welcome. I am 14 months post transplant and the biggest “quality of life” issue I deal with is the pandemic. I have been vaccinated along with the booster shot but with every new variant, I tend to hunker down.
Without Covid, I believe I’d be living a somewhat normal life!
October 8, 2021 at 4:05 am #55043
- This reply was modified 1 week, 3 days ago by Sue.
Glad to hear of your transplant success. I have mild mds so for now no transplant. I am on watch and wait till then. My oncologist predicts I will become symptomatic in 1-2 years as Hb slowly dropping. I have included transplant as a future hope for cure in case things get worse. My problem is age is not on my side as I am 70 currently so no telling how old I would be when my symptoms become worse.
I think your transplant story is encouraging and I hope it gives others hope. Thanks for sharing. RodOctober 8, 2021 at 6:02 am #55044
Would you go through transplant again? Was it tough? How old were you at the time of transplant?
RodOctober 8, 2021 at 4:08 pm #55049
I was 63 years old when I had the transplant. Every one reacts differently and there can be issues that you might have that I did not. The transplant itself is typically non-eventful. It’s just like getting a blood transfusion. The lead up for me in the hospital was 4 nights of chemo, one day of rest, then the transplant. In the following week I had some mouth sores (chemo) nausea and diarrhea. Ten days after the chemo, I began to lose my hair. Your ANC number has to be at a certain level before you can leave, so they keep a board where they write down all your labs. It seemed like forever before mine began to rise but they finally did. I had two platelet transfusions while there. A blood clot from my port but other than that, no major issues. And yes, I would do it again. Part of my only issue during the transplant was that it was in the height of the pandemic and I could not have visitors. So my husband as able to stay with me for 10 days but had to go back to work. The original plan was he’d visit daily after that but because of Covid, once he left he couldn’t come back inside. So he stopped by and we visited “from afar,” him standing 4 floors down on the outside and me standing at the window, FaceTiming. 😊
October 8, 2021 at 7:02 pm #55051
- This reply was modified 1 week, 2 days ago by Sue.
Thanks Sue for sharing your story. My oncologist is not a big fan of transplants, but when I get to the point where I feel I need a second option I will go to Cleveland Clinic. I have been asymptomatic for going on ten years but recently my Hb is beginning to decrease. I am learning to not take life for granted.
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