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I’m still here to watch my grandchildren grow up

25th Sep 2020 - Stephen Barr

When Stephen was diagnosed with acute myeloid leukemia, he was given just four to five months left to live. Two years later, thanks to the Phazar trial, he looks forward to watching his three grandchildren grow up.

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It all started in 1997. I was on a sailing holiday and in the middle of the Irish Sea when I had a heart attack.

An air ambulance lifted me to the nearest hospital where I was diagnosed with essential thrombocythemia – a form of blood cancer where too many platelets are made. I was prescribed medication called hydroxaurea, which controlled the platelet levels that meant that I could go back to living my life to the full.

But in 2011, I started getting breathless. It turned out that I had an enlarged heart due to damage associated with the heart attack. If it wasn’t treated, I would be heading towards an early grave.

Luckily, with medication and the fitting of an implantable cardioverter-defibrillator, I started to improve. However, after a long discussion with my blood consultant, he raised the possibility that in some cases, about three percent of patients did go on to develop a more aggressive form of blood cancer. I did some research about my condition and found that there was a very small chance that I could develop acute myeloid leukaemia (AML). I tried to stay positive and reassure myself that it was unlikely to happen.

I thought it was psychological

In 2017, I was starting to feel breathless again and assumed that it was my heart. I was going through a very difficult time. My father-in-law had very recently died from cancer and I was supporting my wife.

It turned out that my heart was fine. But as I had previously feared, I had developed a form of what was initially thought to be AML. I ideally needed a bone marrow transplant, but this wasn’t possible as it would have put too much pressure on my heart.

Not losing hope

When I was told I had AML, I didn’t remember leaving the hospital. I didn’t pay for parking and got a fine a few weeks later. I was in such a daze. My consultant at Shrewsbury suggested that I might benefit from being referred to the Queen Elizabeth Hospital in Birmingham

However, I didn’t lose hope. My consultant, Dr Ragavan, suggested that if the bone marrow samples confirmed his diagnosis of mylofibrosis, I could go on the Phazar trial funded by Blood Cancer UK. I started on the trial in November 2018.

The first time I drove to Birmingham to be part of the study, I was terrified.

I’d seen my father-in-law go through chemotherapy and I didn’t know what to expect. I had visions of losing my hair and vomiting, but in the end it was fine. I didn’t feel any different!

My wife was terrified too, she looked like a rabbit caught in headlights as I left home. She doesn’t like hospitals, she’s got lots of painful memories and I wanted to do this by myself as I’m not the sort of person that likes to be made a fuss of. When I came back, I told her it was a walk in the park. We were both so relieved.

I formed a brilliant relationship with the nurses on the ward. We’re on first name terms, it makes such a difference.

Every month, I have 14 injections of chemotherapy over nine consecutive days, into the stomach fat. I then have the rest of the month to recover. In addition, every day I take four pills, the two drugs combined control platelets and white cancer cells and reduce bone marrow scarring.

The two drugs aren’t currently licensed to be taken together and this trial is to find out if this combination performs effectively.

The Phazar trial

In the Phazar Trial, researchers want to see if two drugs called azacitidine and ruxolitinib can be given to people with myeloproliferative neoplasms (MPNs), like me, as a treatment.

Azacitidine is a drug that for diseases like mine, tries to reverse the process that causes healthy cells to grow out of control, and ruxolitinib helps to stop cancerous cells from growing and dividing.

Both drugs are already used on their own to treat this group of people, but the trial wants to test how well they work when they are given together.

Being on the trial has definitely extended my life.

I was so happy when I found out I was in remission. I phoned my wife straight away, she was at work but she was screaming with happiness!

I was given four to five months to live when I was first diagnosed with AML, and yet here I am two years later.

I have adult children and three grandchildren. I want to be here to watch them grow up.

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