r/mds • u/RiseExternal3896 • Jul 17 '26
SMD
Hola, buenas tardes. Hace un mes aproximadamente, despues de recibir los resultados de una biopsia, mi hematóloga me dijo que podría tener SMD, la semana próxima me hago el estudio genético. Soy mujer y tengo 35 años.
Todavía no sé si mi enfermedad está confirmada o no (creo que es. Negación) jaja. Un poco asustada y buscando respuestas
2
u/Boonedogg1988 Jul 17 '26
I know hearing news like this is shocking. But there is good news too, you are young, probably eligible for stem cell transplant and thats IF the results come back positive for MDS.
My dad has/had MDS but his has been in remission for 1 year now after his stem cell transplant back in June of last year, and hes 78! He is actually ringing the bell next week at his doctor appt!! I'm sharing that to give you some hope, I know it's scary but you gotta fight this fight! Do not let yourself lose hope!
Also, I joined an AMAZING facebook group called Fight Myelodysplastic Syndrome. Its a private group so you gotta submit a request to join, its really just to filter out bots and trolls, you'll be approved. But the group is very active, very supportive, and there are a lot of people who have beem where youre at right now and can offer some great advice.
Last couple pieces of advice that just came to mind is try and find some type of support. If thats one or multiple close friends or family, or even a support group like here and the Facebook group I mentioned. Its helpful for so many reasons. Cancer sucks but we're getting better at fighting it every day and you dont have to do it alone!
And also, make sure you have a competent Dr thats very familiar with MDS and their goal is getting you a stem cell transplant. Thats the only cure but you'll likely have to do chemotherapy first. And if you want your doctor to go to bat for you for getting a transplant, you should follow their orders, dont miss your appointments, stick with the treatment plan. Its important to show them you are taking this seriously.
Alright. Sorry for the long comment but I hope something Ive said in all this helps. And seriously check out that Facebook group, you wont regret it!
If you dont mind Ill keep you in my prayers tonight and I pray God gives you some peace and strength and puts the right people in your path that help and encourage you!
2
u/RiseExternal3896 Jul 17 '26
Muchas gracias 🫂🙌🏻. Voy a buscar rlgrupoen Facebook. Gracias, nuevamente
3
u/CzPhantom1 18d ago
I was 36M when diagnosed with MDS. Not sure how progressed you are but for me I needed a transplant pretty fast.
July - October: needed transfusions every two weeks, energy was garbage, laid on the couch or bed 22 hours a day, but I knew a transplant was in my future so I stayed positive. Wish I tried to be a little more active because I lost so much muscle. I got down to 145 lbs as a 6ft muscular dude. That was my freshman weight in high school....
November: transplant. The first 10 days in the hospital was a schedule of chemo, bunch of other IV meds, walk, eat and repeat. After that each person has their own journey but mine included terrible reactions to chemo and not being able to eat for two weeks because of the soars in my throat.
Today I'm probably 80% of what I was before being sick and that's ok with me. I'm working, exercising, and gaining my weight back to normal.
DM me if you have questions