Hi everyone, after years of my pancytopenia being treated as an auto-immune symptom, due to slightly marked C4 lupus complement, this year my hb dropped to 66 and a bone marrow biopsy has confirmed Myelodysplastic syndrome (MDS). I just turned 40 so a bit of a shock. I don’t have my letter yet so can’t remember the specific genes, but I’m high risk so they want stem cell transplant asap, however i only have 2% blasts so they’ve said it’ll be minimal chemo (I believe it’s called RIC?). It’s complicated by me having a rare mutated gene which they suspect my brother could have, so he may be ineligible to donate.
Most posts I’ve seen are about intense chemo prior to transplant, so just curious if anyone has gone through similar and can tell me about it, or point me at another post?
Nice to meet you all, and thanks in advance.
Hi @Samuelle and a big welcome to the forum.
I can imagine all of that has come as a huge shock and understandably brings with it a lot of questions and concerns.
I hope others will be able to share their experiences with you. In the meantime I have shared some links to conversations around Myelodysplastic syndrome (MDS) which are on the forum.
Awaiting or considering or had a stem cell transplant, a place to share here
MDS diagnosis at 45 with no symptoms[Being diagnosed with Myelodysplastic syndrome (MDS)]
Remember the support line is there to if you want to talk through anything.
How to contact Blood Cancer UK | Blood Cancer UK.
Sorry if that’s information overload. I just thought there might be bits from each that might help.
Take care
Nichola
Thank you so much, and not overwhelming at all, I’ll have a look through all the links. Nice to (virtually) meet you!
Really nice to meet you as well. I hope you find the forum a useful place to be. It’s great to share experiences and just to say how it really is for you. 
One more MDS to AML so SCT Yes or No?
Hello there @Samuelle, just wanted to welcome you to the forum. I’m glad you found it, and I am very sorry to read of your diagnosis.
Being diagnosed with these rare blood cancers at any age is horrible, but I empathise with the shock of it happening earlier than seems more common. Thank you for sharing that, you’re not alone with those feelings, and for me they did fade.
I see dear @Nichola75 has already shared lots of great links to others around the forum, and here’s the Blood Cancer UK information about Myelodysplastic syndrome (MDS): Myelodysplastic syndromes (MDS) | Blood Cancer UK
You can find others around the forum commenting on Myelodysplastic syndrome (MDS) and Myelodysplastic syndrome (MDS)/Myeloproliferative neoplasms (MPN) overlap via the search box. I know another member joined today mentioning their Myelodysplastic syndrome (MDS) diagnosis, so there really are people here who will get what you’re experiencing.
Nice to meet you too @Samuelle, I hope you find the forum helpful.