MDS, Refractory Anaemia and possible SCT but not possible I'm told.

Hi 

My OH was diagnosed AML Nov 2013.After intensive chemo achieved remission July 2014.After bone marrow biopsy diagnosed MDS  Oct 2014.First Dr saw at Derby said we will start you on Azacitidine injrctions then another Dr came in said we could refer you to see if allo SCT possible.We were offered Birmingham or Nottingham we opted for Nottingham.

We saw Professor Russell at Nottingham in January 2015 and was told they had found from Anthony Nolan Register a 10/10 match for a allo SCT.

He was admitted for intensive chemo for about a week and then SCT 5th March 2015 HE WAS 65.

We are now 21/2 years post SCT yes we had a bit of GVHD thats normal and some chest infections.

But we are still here.

If you have any questions please ask.

Best Wishes 

Alex

Hi my husband has recently been diagnosed with raeb type 2 and am reading group chats come across yours, how are you getting on now ? Hope all is well.

Hi and welcome to the Online Community but so sorry to see you finding us.

This thread is now over 14 months old now so no guarantees that all the folks are active on the site now but lets look for some of them to pick up on your post.

When posting a questions always put the name of the member at the start as this will direct the question to the person....."Hi Thehighlander....'

It would also be really useful if you could put something into your profile as this does help others when replying to you or for those looking for support and information as they can read a bit about your journey so far.

Just click on your username and then select 'Edit Profile' under the 'Profile Settings'. If you're not sure what sort of thing to put just click on my username, Thehighlander to read my profile but my journey was rather long so it is a touch like War and Peace ;)

Keep posting as we are always around to help out.

Hello Connerf,

I rarely post on here now, but your enquire popped up on my email and I know how difficulty getting any information about MDS is. It's such a rarity and there is little specialised support.

My husband is now 22 months post Tx and is doing ok. (He had RCMD type) His chimerism is still under the 100% (he has had four DLIs to try to correct this) and his neutrophils are still low (he's still officially neutropenic). The consultant has just said "That's just how it is, and may always be".

But on a day to day level his physical health is so much better than pre Tx and that's good.(He was very ill before treatment, unable to anything much for himself, not even walking upstairs)  He was given a 50% chance of ever getting this far, so that's also good. I would say though, that the whole process has knocked him for six regarding his self-confidence. There's even less help for that! I know the world tends to see him as "better" but what's inside his head is something else!

Feel free to ask me anything if I can be of any help.

Custard x

• Thankyou for the reply, how old is your husband if you don't mind me asking ? Did he have to have chemo before ?

He was 51 when he had the transplant. No chemo before hand - there was nothing that would have helped. He was so transfusion dependent it was straight to Tx in a hurry.

Custard x

Hi Hope

I have MDS too (RCMD) and will have a transplant next year all being well. You can only have an allo with MDS. I would suggest you book yourself an appointment with Professor Mufti at King's College Hospital - he is a world leading expert and devised the staging model that determines your risk of transforming to AML. I know for sure they have done transplants on people over 60. Yes, overall health is a factor, but don't let the SCT possibility be written off without speaking to Prof Mufti. You can book a private appointment with him I believe. Certainly King's has patients from all over the world, let alone the UK.

Good luck!

ps Of course, they won't do the transplant until the benefits outweigh the risks (I've been on "watch and wait for 3.5yrs"), but get their opinion as to whether or not it's a possibility.

Hi , I am sure that my friend Hope will get back to you but his health situation has moved on and SCT is now basically off the table now.

Keep posting if and when you go through an Allo SCT as you will find lots of help from the folks on this forum. I have been through two Allos and yes it was hard work but do-able and the rewards worth it.

Edit: Just had a look at your profile and you are in a holding pattern at the moment. I was rather different and had to very quickly go to SCT as a count down clock was put on me.

Hi Banka my husband is going to see a professor at the QE January until then the hospital are keeping an eye on his bloods.

Thanks Highlander. Yes, I've been lurking around this site for some time now, just watching and not wanting to have to dip in. I'm so scared for my children and husband (and me). 2 yrs tomorrow since Dad died.

I've seen how supportive the members can be though so I will engage more when the time comes, probably June next year (fingers crossed as there is no cure otherwise).

I just wanted Hope to know that Prof Mufti is out there and he is pretty awesome.

Anyway, thanks for reaching out.