Myelodysplastic syndromes - personal stories

Daisy Turner

Daisy Turner was diagnosed with a type of myelodysplastic syndrome (MDS) at the young age of 16. Now 21 years old, Daisy is in remission and optimistic about her future, eagerly waiting to start university this coming year.

“I first realised something was wrong when I kept falling asleep at school. But when I was diagnosed, MDS was no more than a label to me, I did not feel sick.”

Daisy carried on the life of any other 16 year old, determined that having MDS would not get her down. But reality came when her illness began to take a turn for the worse.

“I was due to go to Peru on an expedition and was devastated to learn that suddenly my delicate immune system would not let me go. But the unique empathy in the way that Professor Mufti, my doctor at Kings College Hospital in London, delivered this news gave me great comfort.”

Having lived relatively comfortably with MDS for three years Daisy still felt unstoppable. But during her gap year her life changed. Suddenly her bone marrow stopped producing important blood cells and she desperately needed intensive treatment.

“What broke me was learning that I would lose my hair as a result of the chemotherapy. Silly, I know, but to me this was a sign that I really was sick and could no longer hide it, not even from myself.”

Fortunately doctors at Kings were able to offer Daisy a stem cell transplant, and she received stem cells from two cord blood donors. This treatment saved her life.

“Even when I was at my worst, sweating profusely and in pain all over, the doctors and nurses at Kings College Hospital never failed to express compassion throughout their impeccable care. I feel proud and privileged to have received such great treatment and as a result consider that more and more patients like me will be seen as success stories.”  

David Hall

David Hall was diagnosed with myelodysplasia in 2004 aged 73. He is a retired businessman and also Chairman of the MDS UK Patient Support Group. (Sadly, David's condition progressed and he died in October 2011.)
 
“With no previous indication of any problem, by chance I happened to have a full medical in 2004 and the blood test showed that my haemoglobin levels were low, so I went to Addenbrooke’s Hospital to have tests. I had a bone marrow biopsy which revealed that I had myelodysplasia. I have the ‘5q-‘ type which is low risk but requires treatment by regular blood transfusions to keep the haemoglobin levels up.
 
I started the blood transfusions at Addenbrooke’s but, after a while, I started to decline and suffered from constant fatigue. My blood transfusions were upped from two units every six weeks to three units every three weeks. The clinicians and specialist nurses at Addenbrooke’s are absolutely wonderful – to me it’s the finest hospital in the world.

Unfortunately because I was having prolonged and continuous blood transfusions, iron accumulated in my blood and after a year of transfusions, I experienced an ‘iron overload’. The ferritin levels in my blood had increased to a point when they were dangerously high. This meant that periodically I needed courses of iron chelation with the drug desferrioxamine to remove the iron from my blood. This is an incredibly uncomfortable procedure, with the drug taken subcutaneously, continuously for nine hours a day, over a period of seven days.
 
After two years of transfusions, my clinician, Professor Alan Warren, recommended a clinical trial being run by Professor Ghulam Mufti at King’s College London, using Celgene’s drug Lenalidomide (Revlimid), at first in combination with the blood transfusions. After a while I stopped the transfusions and was just taking Revlimid. The trial took a year and was amazingly effective. My haemoglobin shot up to healthy levels. The question was if they would stay high when I stopped taking Revlimid but it’s been three years now since the treatment and I haven’t needed any transfusions – it appears to be really effective treatment. I still go back to Addenbrooke’s every three months for blood tests, but I feel I’m doing well.
 
Research is so important because one day we will find the root genetic causes of cancers and when we do it will have such an impact on treatment. We owe it to future generations to encourage research and, as patients, to cooperate, if necessary taking part in trials – it’s the only way things will move forward.”

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