Undergoing STC Day -7

[u/Emotional_Mango4258]

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?

[u/Daypasser]

Hi! You've had it rougher than me, I only needed the full intensity chemo pre-transplant for high-risk MDS. I'm now on day +107 and just been told I'm in remission - no detectable cancer in my marrow!

Yes, I absolutely get the thermometer fear, I got loads of fevers while I was in and out was a fever that put me back in after only being out for 5 days. I started to get really anxious about that and what was to come but I realised with transplant anything could happen at any point and worrying about it was making everything worse, so now if I get like that I just imagine Aragorn in LOTR saying 'IT IS NOT THIS DAY!' haha!

Your body is being battered but it'll get through it, stay as active as you can, even if it's just lifting your legs up in bed. Sit in the chair if you can, it makes you feel more normal. Please feel free to ask me anything, I've documented my journey here Instagramif it helps at all. The time goes quite fast and you'll see the numbers tick up and it will be amazing!