Bone Marrow Transplant Success

[Roderick McCune]

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?

[Dr. Lin]

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.

[Roderick McCune]

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.

[Roderick McCune]

Last question Richard. What does LLS refer too?

[Sue]

If you are on FB, check this out.

https://fb.me/e/HenNIG7R

[Sue]

LLS.org is the Leukemia & Lymphoma Society. They also have great resources and support.
Search for – Transplantation: Blood and Marrow or support resources.

[Roderick McCune]

Thanks Sue for your help on this

[Sue]

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!

• This reply was modified 2 years, 6 months ago by Sue.

[Roderick McCune]

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. Rod

[Roderick McCune]

Sue,
Would you go through transplant again? Was it tough? How old were you at the time of transplant?
Rod

[Sue]

Rod,
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. 😊

• This reply was modified 2 years, 6 months ago by Sue.

[Roderick McCune]

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.
Rod

[Rosalyn Register]

I had a SCT at the age of 65. I have had 18 years of a disease free life. I would recommend it for anyone. My problem now is this past January, my labs have started to drop. I have been advised that my disease has returned. My WBC is 4.3, RBC is 1.97, Hgb is 7, HCT is 21.3, Neu is 17.0. Also my Creatine is 1.30. My Ferritin is 750. I am so depressed! I am currently taking Aranesp every 3 weeks and Zarrio. My body is not responding to this drug. I am trying to get approval to start Luspatercept. Insurance Co. says I have to have 2 BT within 2 months. I had one a week ago. My daughter is going to call MDS Og. and try to speak to someone who can give us some help and advice. My SCT match was my brother. I would do the entire procedure again! If anyone has any suggestions or advice, please let me know. I had my procedure at the Fred Hutch in Seattle where I received excellent care, and I was only in the hospital for 6 months!

[Roderick McCune]

Thanks for sharing Rosalyn. Glad the transplant worked for 18 years, but sad to hear of the return. Hope the approval for Luspatercept works. God bless Rod

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