Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
My Mum was over 500 days post SCT (she is now 66yrs) to treat MDS with excess blasts at 13%. She had a 10/10 donor and had done so well. Sadly though her latest bone marrow biopsy showed excess blasts have returned to 22%.
Her consultants are optimistic though and saying that Azacitidine and a Lymphocytes top up should be able to move her back into remission.
Has anyone had this treatment, or had a family member successfully be treated for MDS this way?
We thought Mum was doing so well - all in shock as we only got the news yesterday.
Any reassurance or guidance very much appreciated!
Hi Tallgal 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.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
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
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