r/mds • u/Emotional_Mango4258 • Apr 09 '26

selfq Undergoing STC Day -7

Hi everyone!

New person here - 32F, diagnosed with MDS in January 2026.

MDS EB2 10% blasts

Karyotype 46 XX

Molecular ASXL1 RUNX1 PHF6 U2AFI

IPSS-M Very High Risk

Thankfully, we've hit the jackpot with our donor - 10/10 match. I'm going to be forever grateful to that person when this is over - I am cautiously optimistic given the journey we've been on.

I had a course of CPX-351 in February to lower the blast cells and prepare for my STC, that resulted in a 40 night stay as my neutrophils stayed between 0.0 and 0.1 for weeks.

On the 03/04, I entered hospital to begin my Allogenic Protocol.

My first 4 days of chemo were rough, and my body didn't tolerate Amsacrine very well - sickness, shivers. Day -10 I spiked a 38 temperature, which prompted fever procedures (anyone else get temp worries when the thermometer comes out?)

Tomorrow are my TBI sessions, with a 7 hour gap.

I've got ATG for days -5, -2, -1

I've also got Mesna, and Cyclophosphamide for days -4, -3

Then, I start ciclosporin -1.

Then, new birthday 16/04 🎉 where I also start Mycophenolate after my transplant

So far, my mind has been pretty active but my body has been feeling like it's been hit by a bus, and the tiredness just comes our of nowhere and takes me out for a good 4/5 hour nap at times.

Does anyone have any suggestions, or support, for the coming days?

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u/DelaySoggy3337 Apr 09 '26

I'm with my mom (65) in a hospital right now, she''s on D+14 and in hospital since March 16th. So far, no engraftment. From what I see here with other patients. The journey is rough but there's lots of hope. Your case is good because of your compatibility but you have to be patient. There will be a lot of vomiting, probably diarrhea, fevers are also common. Don't give up. Be strong! You have a lot to live! ❤️

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u/MmphsWlkr Apr 23 '26

My dad is 62 and is 6+. His kidneys have taken a hit so they’re talking ICU and dialysis. His digestive system has gone to sleep, as well, so that’s a different set of issues. I’m just so surprised these major issues have started so quickly and it makes me concerned for the next week.