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Jayne Snell

Jayne writes about her MDS diagnosis and treatments leading up to her stem cell transplant in July 2012.

This article was published in the MDS UK Newsletter 3 and 4 – in January 2013 – and Sept 2013.

"I lived 42 years with my original blood and immune system; the plan is to live 42 years with my new blood (I changed from O+ to A+), to grow old with Martin, to see my children grow up and to be a Grandma (in a few years!!).  So far so good."

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Maynel Vessey

Secondary MDS (following breast cancer) – with chromosome 11q deletion
Diagnosed 2010 – age 67.  Watch and Wait/Watch and Monitor

“I have never met anyone else with M.D.S. but would love to hear from anyone with similar experiences.  Unfortunately I am a techno-dinosaur, but Sophie has my address.”

Maynel Vessey – MDS experience Secondary MDS (following breast cancer) – with chromosome 11q deletion Diagnosed 2010 – age 67

Maynel Vessey

Watch and Wait/Watch and Monitor

I was diagnosed with breast cancer, stage 2, (just into the first of the lymph nodes) in December 2001 and after a lumpectomy, 5 weeks of daily radiotherapy, followed by five years on Tamoxifen, (the oestrogen zapping tablets which have the opposite, to the beneficial effects of H.R.T.),  I was beginning to be hopeful that I had kicked the big ‘C’ into oblivion.
Then my six monthly appointments with the oncologist began throwing up increasingly lowering platelets and white blood cell count.  After a radioactive bone scan said the original cancer had not spread, and two further appointments over the next year, she said it was time to start investigating, and arranged for a bone marrow biopsy.  I had this in May 2009 and went to get the results in the September at the small local hospital, from the haematologist.

Sitting in the waiting room, a nurse came out and gave me a printed A4 sheet to read.  It was about M.D.S. which I had never heard of, and I was immediately puzzled, and convinced she had given it to the wrong patient.  Left until last, at the end of the doctor’s long morning, the haematologist got out a small booklet on M.D.S. and drew a circle around my age group (67), the low risk box, and life expectancy (4.5 to 9 years).  “You have an acquired chromosome abnormality, a deletion on 11q,” he said.
“Have you any questions?  “I was speechless.  “How have I acquired it?” I eventually stammered.  “Well I see you have had breast cancer.  You didn’t expect to get away scot free, with no after effects did you?”  I assured him that this had been my hope.
He explained that no one was sure what kick- started M.D.S. , but excess radiation was a prime suspect – the breast cancer radiography was the most likely.  My mind ran through all the dental x-rays, those for broken bones and even the ones at Timpsons shoe shops, as a child, to see if every new pair of shoes fitted perfectly.
“We can’t do anything to treat it- we watch and wait.”

I drove home in a daze, with a thousand questions to ask, now the chance had passed. Because of my age, I wondered if I had been written off.  Even worse when I looked at my full blood count read – out and compared it with his table, I realised  he had made a mistake and that I was  in fact ‘intermediate’ risk.
He left shortly afterwards, and I was passed on to another haematologist who gave me even less confidence. I asked if I could read the original A4 sheet of information that I had seen, but he knew nothing of it, and didn’t seem to know much about M.D.S. at all.

I got in touch with the M.D.S. support group, and talked to Sophie Wintrich on the phone.  I explained that I felt abandoned and that I was suffering from painful inflammatory arthritis in most joints and probably fibromyalgia both of which my haematologist said had nothing to do with M.D.S. but that I didn’t believe him.
I wanted to know exactly what defined M.D.S. –  if you had a complaint, how did you know whether it was due to your underlying condition, or something else entirely.  I also found that one minute you could be seriously talking about the possibility of a knee operation/ replacement but at the mention of having an obscure type of leukaemia, they didn’t want to know.  Sophie explained that I was entitled to a second opinion and that my nearest M.D.S. specialist was Professor Bowen at St. James’ Hospital, Leeds,  fifty miles away.

I was lucky he agreed to see me. I now normally go to see him every six months.  It was a very reassuring move.  He answered all my questions and was a great listener.  He explained that a number of his M.D.S. patients have types of inflammatory arthritis, and being an auto-immune disease too, there could well be a link.  He referred me to a rheumatologist in the same city and their cortisone injections and tablets have improved my quality of life considerably.

Maynel Vessey2

It is now five and a half years since the original biopsy and I still see the local haematologist in between Prof. Bowen’s appointments but he expresses concern that there is no reason to travel to Leeds.  Even I have to admit that I’m helping to bankrupt the N.H.S.  – but Prof. Bowen came up with some information which, for someone who needs hope, above everything else, was just what I wanted to hear.
He explained that he had been to an international conference where M.D.S. had been re-classified and my deletion on chromosome 11q came in the category which had the best prognosis.
He also wrote a letter for me to carry in my handbag, along with my latest full blood count results, which informs anyone in case of my having an accident, to be aware that I have low platelets and white blood cells, because of bleeds, bruising and infection implications.

The main problem now is of overwhelming tiredness which will unpredictably strike.  I go to sleep up to four times a day which could be in shopping centre car parks, on public transport, and even in the middle of a conversation, but in my own bed between 12am and 8am is much more difficult.
Should you just give in to it, or fight it, and if so, how?

I have never met anyone else with M.D.S. but would love to hear from anyone with similar experiences.  Unfortunately I am a techno-dinosaur, but Sophie has my address.

Maynel Vessey3


Kay Smith

Story coming up ….


Daisy Turner

Daisy, diagnosed as a teenager, is one of the uncommonly occurring cases of MDS in young people.  Although Daisy was successfully treated with Bone Marrow Transplant few years ago, her journey with cancer hasn’t ended there. She decided to use her experience for the benefit of other young people suffering from cancer in UK and now works as Fundraising Manager for CLIC Sargent Charity - UK’s leading cancer charity for children and young people.

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Anthony Abel

Anthony, diagnosed with high-risk MDS and is currently being treated with Azacitidine. His route to diagnosis wasn’t a straightforward one and required a deal of determination and perseverance on his behalf to find the cause of the symptoms with which he was struggling for some time. Sadly, this also had an knock-on effect on his emotional health. Anthony is open and honest about the challenges he encountered and hopes his story may help others in similar situation. Anthony is also on our online Forum and would like to hear from other patients with similar experiences.

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Rodney Taylor

Rodney was diagnosed with MDS at the age of 64. Within a couple of years, his symptom-free illness, at first, progressed to a hugely debilitating condition. Having entered a clinical trial of a promising drug treatment with azacitidine, Rodney was eventually freed from fatigue and transfusions for 4,5 long years, and decided to actively campaign for the approval of the drug by NICE. Having stopped responding to azacitidine, at the age of 71, he underwent a stem cell transplant.

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Andrea Lacey

Andrea diagnosed with MDS RAEB-t type at the age of 29 was treated with bone marrow transplant in 1994, but relapsed a year later. With 5% chance of success, she was advised against the second transplant. Following a gruesome period of intensive chemotherapy treatment, she fought to have a last-chance treatment called donor lymphocyte infusion (DLI).  

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Margaret Shepherd

This is the contribution from a loving daughter, who looked after her Mum.  This was written to help other family members or patients to prepare themselves when it is established that nothing else can be done – or if a patient has decided they do not wish to undergo any further treatment.

It is written in a loving, positive way – and we sincerely hope it may help some families affected by MDS.

Download and read Margaret's testimonial here: A RELATIVES PERSPECTIVE OF MDSwebPDF

"When one person in the family has cancer, the whole family are affected by the diagnosis and Myelodysplastic Syndrome (“MDS”) can be a particularly challenging illness to treat and live with.
My advice to families who find themselves in this situation, is to be open and honest from the start.  You must accept the fact that your lives will go on hold, but sharing your fears and frustrations will bring you closer than you could have ever imagined. And it is this closeness that will guide you through the toughest of days and give you the strength to go on fighting."

"My mum was an active, fiercely independent woman but with a particularly rare and severe type of MDS I had to witness her simply waste away in a matter of months.  I miss my mum deeply and contrary to what people might think or say, time, nor faith will ever fill the void I feel in my heart."