MDS Relapse following SCT

Hi  and welcome to our little corner of the Online Community and I see that you have been getting some great help from Jane in our Ask an Expert section.

So sorry to hear about your mum, I am now over 1370 days post my second Allo SCT and I am doing well so even more sorry to hear how things have developed.

My blood cancer was rather different being a Skin Non Hodgkins Lymphoma so have not had the same journey apart from my Chimerism was still down at about 50% at 18 months post SCT but a few DLIs kicked everything back into action.

The fact that your mum’s team are optimistic is good - we always thought “..... if my team were happy we were delighted”

Lets see if any of the group members can come along and give you any first hand support.

((hugs))

Thank you Highlander - much appreciated x 

So sorry to hear your news. My story is similar as had SCT and did well for 16 months. Had MDS which coverted to AML. Had 3 cycles of Aza & just had first DLI. Will have 3 more cycles of Aza then test bone marrow. Tolerated Aza really well. Just waiting now to see what may happen re GvHD.  Physically quite well but emotionally its tough. Stay in touch & all my best wishes to you & your mom.xx

Very sorry to hear your news too. We only found out that Mum has relapsed on Thursday so still raw and rely devastating after she did so well for so long. 

Her consultant is optimistic and overall Mum is very fit and healthy and mentally strong so there is lots to be positive about. What was your blast level when you started Aza? I know it can work really well and with DLIs it can certainly through MDS back into remission.

Fingers crossed for your next bone marrow. 

Best wishes xx 

Blasts were 15% then after aza went down to 4%. Needed blood transfusions after each cycle & 1 lot of platelets. Minor side effects. Good luck. Xx

Hi all, 

It has been some time since I posted, so wanted to provide an update on my Mum. I am very pleased to say that she is doing very well and that the Flag-Ida she had last summer stopped her MDS and AML in its tracks. 

Her latest bone marrow biopsy was fine (albeit not a great sample, but what the consultant could see he was happy with!). Her bloods are all super - Neutrophils are 5.1 at the latest result. Chimerism also high at 99% peripheral blood and 97% T-Cells.  No nasty infections also. 

So they are cracking on with DLIs this week to keep everything at bay long term. Everyone saying how well she looks. 

Hope this post gives some hope and positivity to those facing a relapse, particularly for MDS following an SCT. There is so much they can do these days, and lots of different drug options.  I have no medical training but do feel I have learnt a lot in the past few months! I do know that MDS is incredibly "individual" and what works for one person, may not work for another and vice versa. So don't get caught up in the stats! 

TallGal x 

Hi ,

that sounds really good, glad she is doing so well....

Hugs xxx

Thank you for coming in with this update and ((hugs)) all round for this to continue in a positive direction.