Evie McClean

Evie McClean is a young member of the MDS UK Patient Support Group. In July 2014, when she was 8 years old, Evie was diagnosed with leukemia. After 4 months of chemo she had 6 month of remission, but then she became ill again.

In July 2015 she was diagnosed with MDS and bravely endured more bouts of chemo. In November 2015 Evie received a bone marrow transplant.

Very sadly, after being well for some months, in August this year her mother, Nicki McClean, was given the devastating news her daughter would need another transplant after she was diagnosed with leukaemia once more.

She had a second transplant on 22nd December 2017, Evie’s 12th birthday.


Evie at Royal Marsden Hospital

Evie and her mum Nickie

Evie tells in this video about her previous transplant in November 2015

70 percent of those needing a bone marrow transplant using donor stem cells are unable to have one because a suitable bone marrow donor cannot be found

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Shirley O’Brien MDS Story

How a clinical trial gave me my life back after MDS and AML

Five years ago, my spouse and I had settled into our dreamed-of retirement. But on Feb. 6, 2012, I was diagnosed with myelodysplastic syndrome (MDS). Because I was in my early 70s, a bone marrow transplant wasn’t my best option.

Shirley O’Brien

What happened when the chemo stopped working

I received chemo infusions for seven days every 28 days to improve my bone marrow and blood cell function. But after nearly 3 1/2 years of this, I learned the chemo was no longer working.

A subsequent bone marrow biopsy demonstrated progression of my MDS, with the identification of an IDH1 mutation.

I sought a second opinion and got a grim prognosis. The oncologist gave me only five to seven months to live. He said I needed to find a clinical trial soon.

CAR T cell therapy is currently being evaluated in the clinic at MSK for certain types of leukemia and lymphoma. In this approach, T cells are genetically engineered to recognize a protein called CD19, which is found on the surface of blood cells called B cells. In the largest study reported so far, for adult patients with B cell acute lymphoblastic leukemia — a rapidly progressing form of blood cancer — a report published by MSK researchers last year found that 88 percent of patients responded to the therapy. In late 2014, the US Food and Drug Administration granted MSK Breakthrough Therapy Designation for its CD19 CAR therapy.

Choosing a clinical trial at MD Anderson

During my search, I learned about a Phase II clinical trial at MD Anderson using an experimental drug called AG120. About a week after I applied, Courtney DiNardo, M.D., asked me to travel from my home in Tucson for testing.

Between MD Anderson’s huge campus and the battery of medical tests, our first visit was overwhelming. Yet, when Dr. DiNardo entered the room, she immediately made us feel like we were long-time patients or even friends. She was so cool, young and confident.

Only 24 hours after my spouse and I returned home, Dr. DiNardo called and asked us to return right away. We canceled our holiday plans, packed our motorcoach and arrived in Houston on Dec. 12, 2015.

At MD Anderson, we learned that my MDS had progressed to acute myeloid leukemia (AML). This was shocking, but I felt a strong sense of hope. We were right where we needed to be. People come to MD Anderson from all over the world, and I was grateful to be there with so many other AML patients.

On December 23, I took my first pills for the clinical trial. Then came endless EKGs and every-other-day blood tests to check my blood cell counts.

My amazing AG120 results

Two weeks into the clinical trial, my white cell count was higher than it had been in two years. My spouse and I were amazed.

But the biggest surprise was my blast count. When I’d arrived at MD Anderson, it was at 30% — extremely high. At the end of the first 28-day cycle, it was just 2%, which is normal.

Unlike chemo, which tries to kill the blasts and everything else in the bone marrow, AG120 blocks the mutant IDH1 protein that caused my AML. It allows the blasts to mature properly into normal white cells of the immune system. The bone marrow is no longer crowded out by AML, and the normal red cells and platelets return, too.

I’m now beginning my 12th cycle of AG120, and my blood values, red blood cells, white blood cells and platelets have all reached normal range. I’m in complete remission, but I will continue to take AG120 indefinitely. Whenever Dr. DiNardo’s team asks about side effects, I can’t come up with anything.

I am so grateful and praise God every day for giving me my life back through the AG120 clinical trial.

I used to always say you have to be your own advocate because no one else will. But I was unable to take charge of my cancer until I met Dr. DiNardo. I’ll always remember what she said the day before I enrolled in the clinical trial: “You are in the right place at the right time with the right mutation.”

Take a look at current MDS clinical trials

Patient’s Story: Linda takes part in a clinical trial

I first visited my GP in March 2014 with the symptoms of a condition which was eventually diagnosed as Sideroblastic Anaemia. I was 59 years old, still working full time as a Chartered Accountant, and enjoying a life without any responsibility except for work and home. The Haematology Clinic at the PRU and the Supportive Therapy unit became increasingly familiar to me as I went through an array of tests whilst receiving regular blood transfusions. Eventually, it was determined that I had MDS RCMD.

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Sachiyo Ishii tells us about her mother’s MDS

Sachyio lives in the UK. Her Mum has MDS, but lives in Japan. A few of our members have family far away, and when travel is particularly difficult or expensive it gets really hard. So this is the contribution of one daughter – helping her Mum cope with MDS and helping to raise awareness internationally. Take a look at her brilliant blog full of amazing ideas and gifts.

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Anna Sherratt

Back in August 2015 I was noticing how tired I was. I would sit down in the evening feeling totally exhausted and then castigate myself mentally that I hadn't accomplished everything I had planned to do. Was there something wrong with me?

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Nigel Walpole

MDS picked up via a routine blood test

My MDS story unusually starts some years before diagnosis. In about 2006 or thereabouts, my sister was diagnosed with MDS.

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Emma Paine

I have been fighting blood cancer for 12 years, and I have been fighting it hard. I have taken every opportunity given to me to treat it and live my life to the fullest. When my MDS relapsed and showed signs of progression to AML in July 2015 I was shocked to find out that the choice to fight was no longer in my hands. I had to ask for permission to fight.

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Brenda Goodland

Brenda's MDS was diagnosed in 2008. For six years she was in a “wait and watch” period; having regular three month blood tests and an annual bone marrow test. MDS did not stop her from living a full and busy life.

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Joseph Vella

MDS patient with experience of azacitidine, followed by a stem cell transplant – at age 63.
Joseph is a medical practitioner by profession and now 66 years old.  From Malta.  However, nowadays he spends long periods in Britain, in Bury St Edmunds.

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Fiona: A Del-5q patient, successfully treated with lenalidomide

“I was in my early 30’s when I was diagnosed with MDS 5q- when there was very little to offer in the treatment of MDS other than supportive care, or bone marrow transplants. “
Fiona is an MDS del 5q patient, and is being treated with lenalidomide.

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