Myelodysplasia

Hi again , good to see you are navigating round the site.

Stem Cell Transplant (Bone Marrow Transplant) has come a long way over the years. We have a woman in our Maggie’s Heamatology Support Group who has MDS with other medical issues but is two years on from a Allo (Donor) SCT where her donor was only a 50% match (Haplo SCT)

She did not have a good prognosis a few years back but like myself (with other medical issues and not in remission going into both my Allo SCTs) it was ‘risk over result’ choice. I was told a few years on the clock so I was given the chance to roll the dice as my brother came back as a good match.

Lets see who is still looking into the group ((hugs))

Thank you for replying, I was tested myself and I am a 50 % match but the hospital think his to much of a risks even if the match was higher the doctor was going to take him of the list but my brother said what if 100 % match come available so she’s kept him on his 69 this years and before he got covid his was very healthy still works (builder) he does have asthma but it’s not bad and he has crohns he has recently had a blood transfusion which has made him feel a bit better and he should be starting this drug called azacitidine all you ever do is seem to wait for results phone calls, I am praying for a new drug to come out or a 100% match 

Hi, as I said it’s ‘risk over result’ you said in your first post he has a few years without going into SCT...... I was the same. So my wife and I sat a rather long time with the team and talked through the challenges, I have asbestos so lung issues and they were not happy with this, I was 58 and 59 when ai had my two Allo’s eventually I signed permission to go for it accepting it could kill me off..... but worth a try.

I have talked with many in their late 60s early 70s who have gone through SCT.... with other medical issues and done very well, some not..... one who was 68 had a 50% match

I will also say that my SCT unit did put my case out to other centres SCT units to get a wider opinion and this tailored the rout we took.

Some very open conversations still to be had I think.

Happy to talk more at any time ((hugs))

Hi Tilligirl, how are you getting on with your treatment, have you had your SCT? I’m going in for mine next week and wondered how you’d got on. Hope you’re doing ok x

Hi Louise A it looks like your first post so welcome. 

What type of SCT are you having? An Auto SCT using your own cells or an Allo (donor) SCT?

Do you know what conditioning your tram are using to kill off your immune system?

You may want to have a look at this thread where we have collected about going through SCT Checklist for SCT Unit

Always around to help out as best as we can ((hugs))

Hi Mike, thanks for the welcome. I’m having an allo SCT, conditioning treatment is fludarabine, busulphan and ATG conditioning. I’ve already had Flag-Ida. 

It’s so interesting how teams choose conditioning. I had ATG as part of conditioning for my first Allo SCT then had Flufarabine as part of my conditioning for my Second Allo SCT...... both were ok but with the ATG I had to have massive amounts of antihistamine as ATG is grown in rabbits (it was a horse for my one) as I have a bad animal allergy so slept a lot of the time as the antihistamines just knocked me out 

Hit my name to see my story ((hugs))

Oh I have allergies too so that may affect me. Never mind, I’m just keen to get on with it now. Thanks for the info 

Do make sure they know about the allergies.

The bizarre thing is my tram now say that I possibly don’t have these animal allergies as my brother (my donor) did not have animal allergies. I was also allergic to Penicillin...... but most likely no longer am.... we take on a lot of the immune system characteristic of our donors