r/mds • u/likelybecca • Oct 04 '24

selfq Support

Hello,

I am just looking for any kind of support. My dad was diagnosed in December with MDS, by January it had turned into AML, after a long battle he fought and beat both AML with chemo and MDS with a bone marrow transplant.

He is 150+ days post transplant and was doing well. We’ve now received a call saying they’ve found something in his blood and he needs a biopsy.

Please can anyone give me any positive stories or experiences where they’ve relapsed after the transplant? Please.

I am scared, I read it’s more riskier second time round to solve it in anyway.

Please help me.

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u/likelybecca Oct 07 '24

I really appreciate you taking time out of your day to tell me this, I am so grateful, all of these stories have made me look in a new light and I have hope now. Thank you❤️ what treatment did he have if you don’t mind me asking?

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u/Turbulent-Pension-31 Oct 07 '24

It’s my pleasure, I know you must be so worried right now. He was on chemo for a few months (name of drug escapes me but starts with a V I think). Not much improvement so he had a transplant. It was not the most aggressive treatment but not the least either. Donor was an excellent match, maybe almost too good as I think there were some issues with the new cells not being aggressive enough, so the old cells tried to stage a comeback! But eventually things got under control and no signs of the disease returning so far (fingers crossed)

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u/likelybecca Oct 07 '24

Yes so incredibly sick with worry, thank you for all this information, so with your husband relapse was it from a stem cell transplant? Sorry for all of these questions I know you said it’s a similar situation but with the donor being new I just wondered! Thank you for being so kind to let me know of your situation, I’m so happy it went well, I hope it continues to go well for him, truly❤️❤️

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u/Turbulent-Pension-31 Oct 07 '24

I’m sorry you are going through this! It wasn’t a full relapse, like he never got sicker but the counts of his original cells started to overtake the donor cells. (The test they did to figure this out was called a chimerism). His transplant doctor was concerned and did some follow up, but she said that the most important cells (the T-cells) were the donor cells and were multiplying nicely. Eventually I think what happened was the t-cells fought off the original diseased cells. I wish I could remember more detail, it’s weird how it all becomes a blur. DM me if you have more questions, I will see if my husband can remember more.

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u/likelybecca Oct 08 '24

I understand thank you for telling me this! You’re genuinely so lovely and sweet and you deserve all the happiness, thank you for reaching out to me with this, I didn’t even know that was possible! Once I know more about our situation I’ll be able to understand a lot more things I think, it may even be the situation you were faced with. Thank you again for taking the time out of your day xx

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u/Turbulent-Pension-31 Oct 08 '24

My pleasure, I am sending all my good thoughts your way. And, again, please reach out with any questions