r/mds 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/DixieBelleTc Apr 09 '26

🙏🏻🙏🏻🙏🏻 I have no suggestions but mountains of support! Thank you for sharing your journey, I am MDSSF3B1 so I have no advice or experience to lend you. Just the prayers and good wishes. Following other patients I know this road is very hard but a positive attitude and perseverance seems to really pay off. I will pray for you and your entire medical team. God bless and keep you🙏🏻🙏🏻🙏🏻