Tess and Gordon Brown

We became members of MDS UK in September 2014.  Gordon was diagnosed with MDS in October 2010 following 2 years of progressive anaemia.  He was then put on a “Watch and Wait" regime which lasted until September 2014 when Gordon became blood transfusion dependent.

We knew very little about MDS and, in trying to find out as much as we could about it, were fortunate to discover MDS UK.  We became members in September 2014 and started going to our local Bournemouth Patient Support Group meetings.  These were an invaluable source of  support, finding out about different coping mechanisms and gaining a good knowledge about the illness and current treatments from the specialists who gave presentations at the meetings.

Unfortunately, in October 2023 Gordon’s haemoglobin level fell from 102 to 51.  A subsequent bone marrow biopsy showed that his MDS had progressed to AML and, in December, he went into hospital for his first course of Azacitidine injections and oral Venetoclax which, thankfully, has led to remission.

Gordon has completed 6 cycles of treatment and the main issue now is whether he should go for a stem cell transplant or continue on the current treatment which he is tolerating well.  His consultant felt that because Gordon is 74 the risks of possible complications and no guarantee of a good quality of life outweigh the advantages.  We then had 2 additional opinions from consultants at  UCLH and Southampton who both felt the same, but didn’t rule out him having a transplant.

Quality of life is the most important factor for us to consider when making our final decision.

Tess & Gordon Brown

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