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Because my journey can help someone with theirs

1st Oct 2020 - Jane Leahy

It's been four and a half years since Jane achieved remission. Here, she reflects on the painful symptoms and "horrible" side effects of her blood cancer treatment, and explains that without taking part in a clinical trial, she wouldn't be here today.

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I was diagnosed with acute myeloid leukaemia in December 2014. In the months leading up to my diagnosis, I was generally unwell. I had a bad cold, sinusitis and conjunctivitis. I even went to the dentist for gum pain, and had two rounds of antibiotics, which didn’t help at all. I also developed a rash all over my body and my face became very swollen.

After going to the doctors and giving blood samples, I was immediately signed off work. That evening, my doctor called and told me to go the hospital, where I was diagnosed. I never imagined it would be as serious as leukaemia.

All I knew about the disease is that people can die from it. I was pretty terrified.

Three cycles instead of four? Sign me up!

Due to the type of leukaemia I had, my consultant suggested that I take part in the AML17 clinical trial. This meant I had a 50/50 chance of having just three cycles of chemotherapy instead of four. I signed up straight away.

After 10 days of chemotherapy, I developed sepsis and became desperately ill. I was in hospital for five weeks, including Christmas day.

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My final cycle was fraught with problems

I developed an infection, where the source was unknown for some time. I was given numerous antibiotics, which failed to clear it up and I was in a lot of pain. This led to me passing out and splitting my head open.

It turned out to be an infected fallopian tube. After 11 weeks in hospital, I was finally discharged. Finally, in April 2015, I was told that I was in remission.

The feeling was absolutely amazing! I thought that was it, the whole ordeal was done.

Although the worst was over, I still felt very weak. But I was home and with my family.

The side effects of chemotherapy are awful. The worst of it was having painful sores that made it incredibly difficult to eat or swallow. I had absolutely no energy or immune system and developed horrible infections and side effects.

The clinical trial

As part of the clinical trial I was on, called AML17, I had additional monitoring for minimal residual disease (MRD). This meant I had a bone marrow biopsy every three months for a further two years following remission. This part of the clinical trial was funded by Blood Cancer UK.

The minimal residual disease test

Our researchers created the first minimal residual disease (MRD) test that detects cancer cells that are left behind in the blood or bone marrow after treatment.

This test is used worldwide and can tell you how someone has responded to their initial treatment. It also helps doctors to plan whether they should increase or decrease the intensity of subsequent treatment.

A few days after my first bone marrow biopsy after achieving remission, I was back in hospital for a keyhole surgery. This was to remove the infected fallopian tube. Before the procedure, my doctor and clinical nurse specialist asked me to do another bone marrow biopsy.

They didn’t say anything at the time, but it was clear that something was wrong.

I was so worried. Whilst recovering from the surgery, I was told that my leukaemia had returned. It was such a huge blow. I was absolutely devastated, and even worse, I was on my own. I’m incredibly lucky to have been part of the clinical trial and to have found this out then.

Back on treatment

After having three cycles of chemotherapy, I found out it wasn’t working. I also tried a new combination of chemotherapy drugs, but that didn’t work either.

Thankfully, I had three more treatment options. The preferred choice was an experimental American drug, which showed a lot of promise in a small-scale clinical trial. It was available in the UK, but only privately, and it was very expensive.

Luckily, I had private medical insurance, and my employers agreed to fund two cycles. This was so much better than chemotherapy. I had far fewer side effects and got back into remission in February 2016.

My stem cell transplant

I was told that I needed to have a stem cell transplant to reduce the risk of my cancer returning. Fortunately, my sister was a match, but her body mass index was too high. Whilst I was on treatment, she lost three and half stone. I’m really proud of her.

About a year after the transplant, I was diagnosed with graft-versus-host disease in my eyes. It took about a year to find the right combination of drugs and I had to have surgery. I now have graft-versus-host disease in my lungs, which we caught early. Unfortunately, it’s not something that can be cured, but I’m on medication to manage the condition.

It’s been six years since I was diagnosed, and four and a half years since remission.

Without being on the clinical trial, and specifically part of the trial that Blood Cancer UK funded, I wouldn’t be here today.

I’ve learnt, first-hand, about the benefits of clinical trials and there are always new ones taking place. I had a pretty horrendous treatment journey, but I hope that by taking part in the clinical trial, someone else will have a better journey – with fewer side effects and a better chance of survival.

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