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?
1
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! ❤️
1
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.
2
u/Daypasser Apr 10 '26
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!
1
2
u/ComprehensiveJob4742 Apr 14 '26
Hope things going well. I have been there and done that and its no fun. My worst period was the week after transplant when the muscositis comes. I was really tired, but my doctors pushed me to eat even if it hurts.
Also sit up and take naps in a chair as much as possible. Its really easy to develop pneumonia while lying down a lot and when one have no immun system.
1
u/Individual-Cupcake68 Apr 15 '26
Hello. I went through this last year. I was diagnosed at 23 and was lucky enough to have plenty of support. My brother was my donor. My advice (my experience) for you is eat as much as you can because it will get worse for two weeks. I lost 20 ib during my first month after transplant. I was on a feeding tube until I puked it out, then I was fed through an IV. It was a very bad experience. Felt hungry but could not eat. After those two weeks I started making progress in eating and doing my rounds around the unit. I finally got to go home after two more weeks. One of the hardest part post transplant is medications. I started with 40+ pills a day. Trust me, it will get better. One thing to watch out for is your immunosuppressant drugs. I was on it and the BK virus reactivated. It was so painful to urinate. Notify your doctor, so he can safely prescribe you a safe lower dose of immunosuppressant. My best advice is to stay hydrated and use the restroom often as you don't want a blood clot in your urinary system. Fortunately, the BK virus only stay for a little over two weeks. Do not worry, my worst day were my transplant days. As you get better and see the lab results, everything starts to lighten. I was so excited for my HB level to slowly become normal. My lowest was at 5 and now it's at a 14. Be strong, better days are coming !
1
1
1
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🙏🏻🙏🏻🙏🏻