Allogenic Stem Cell Transplant

[Siobhan Scully]

Hello All, my husband is a candidate for an allogenic stem cells transplant. He is presently trying to weigh up the best option transplant verses staying on the azacitidine protocol. He is 64 and his diagnosis is MDS-EB intermediate/ high.
We understand there is a fairly high percentage of patients who have survived the transplant to then battle with GVHD and so quality of life has to be factored into the decision. Does anyone have an idea of what percentage do develop GVHD and of those how many have severe symptoms? Would be grateful for any and all feedback!
Siobhan

[Kathleen Till]

I had transplant on Sept 9th last year. Just over 6 months out now. Had slight GVHD in digestive system but did not last. They gave me some medicine and it cleared up. Most people get some stomach problems at first, I think mainly because the chemo changes the taste of food. I did not want to eat but as soon as they gave me the medicine it sorted it out.
Have not had any other problems except got fungal pneumonia but believe I had this when I went in for transplant due to the fact that I love gardening and my immune system was too low before to cope with it, was on a pill for three months and now cleared up.
I am happy with my progress but one never knows from day to day what might happen, but none of us know anyway so have transplant, keep exceptionally positive and take it day by day. Everyone gets upset stomachs and some sickness during treatment but do not let this get you down, it goes away.
If you do not have transplant and carry on with your treatment it will never go into full remission. I had MDS high level with Trisomy 8 chromosome.
I am 73 and was grateful to be a candidate for transplant.
We are all different.
Good Luck with your decision. Reading all the bad things before transplant is not always a good idea. I left that to my daughter to do the worrying for me.
She stayed in my room for three weeks because of Covid I could not have visitors. Having her there all the time was great. She gave up a lot to be with me, but she was the best medicine ever.
Sorry this is long winded. They let me come back home on day 62 which was great as usually you have to stay very close to hospital for 90-100 days. I am 45 minutes from Moffitt now. ❤️❤️❤️

[Siobhan Scully]

Thank you so much Kathleen for your response and positive advice! Can I ask if you were on the azacitidine protocol prior to your stem cell transplant and if so for how long?

[Dr. Lin]

Over half of all patients will get some form of acute or chronic GVHD, but only a minority severe requiring hospitalization or severe morbidity and mortality. Most others can be treated with topic steroids or a short course of oral meds. In addition, the development of chronic GVHD is actually protective of disease relapse.

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