How Personalised Cancer Treatment Saves Lives : Mo's Story of Beating Cancer

How Personalised Cancer Treatment Saves Lives : Mo's Story of Beating Cancer

I was in agony, the pain in my abdomen was continuous day and night. At times I couldn’t breathe. The pain killers went up in potency, from paracetamol, codeine, co-codamol to eventually tramadol. My GP advised me to use them sparingly, the tramadol just about helped me sleep.

6 weeks of hospital visits, for blood tests, chest x rays, ECGs, ultrasounds; nothing was getting to the cause of the pain.

Until the ‘cameras’ were put inside. An endoscope to check my upper gastro and a colonoscopy to see what was happening in my colon. What followed was an emergency CT scan.

It was serious.

On a cold, wet, gloomy December day in 2014, I was sitting in the consultant’s room. I had very little experience of the medical world. So when the doctor said I had stage 4 bowel cancer, with a small chance of success, I began breaking up inside. My hands were shaking as I signed the consent forms for chemotherapy, to begin on Christmas Eve, just 4 days after my 32nd birthday.

The fear was real, and the questions deep and plentiful, one being; would I live to see another New Year?

I did go on to survive a year, a year which included;

18 cycles of chemotherapy

A major operation to remove my colon

A blood clot in my lungs

And too many side effects to list

A year of treatment to then be told; “the chemo’s not working, the cancer’s growing, and there’s nothing more we can do for you”.

My cancer, medically speaking, was terminal. The NHS had no more options. Without treatment I was on a trajectory of more pain and suffering, to eventually death.

Strangely 2016 began with hope. Hope due to something called Lynch Syndrome, a genetic condition.

My dad died of bowel cancer when I was a baby, and because I was diagnosed with the very same cancer in my 30’s I was offered a genetic test. The genetics came back Lynch Syndrome positive. People with Lynch are at a higher risk of developing bowel cancer, and women with Lynch have the additional endometrial risk.

If someone knows they have Lynch, interventions can reduce the risk, and even prevent cancers from developing. In my case, I learned of it, too late, after my cancer. Knowledge of Lynch also allows other family members to be offered testing and if positive can help prevent cancers.

The hope? There was new research showing Lynch cancers responding incredibly well to Immunotherapy, a new approach to tackling cancer. This new treatment offered me a chance at life, the only problem being the cost. My doctor said I needed to be a millionaire to pay for it.

I was referred to the Sarah Cannon Research Institute to try to find me a clinical trial, as immunotherapy wasn’t (and still isn’t) available on the NHS. Unfortunately, the trials weren’t accessible and the only route to getting access was to self-fund.

My friends suggested crowdfunding which was the last thing I wanted to do. I’d go to bed asking myself whether I was worthy, whether I was deserving, and questioning the price on life.

I explored the deeper meaning of my life, and eventually put my pride and ego to one side and said “yes, lets’ fundraise”. We launched a £200,000 crowdfunding campaign.

To cut a long story short, incredibly we raised the money, I had the treatment, and the cancer disappeared. If you want the longer version, I wrote a book; Choosing To Stay.

It’s over 6 years now from when I first felt the pain, and am extremely grateful and lucky to be alive.

From knowing nothing about cancer to now knowing more than I ever thought I’d need to. I’m continuously being contacted by people affected by cancer, asking for advice. Too often I hear of people dying from the disease. I sit on a number of boards and advisory groups to help make positive changes in the cancer world.

What I know is that the world of personalized cancer treatment has to be the future.

There are so many innovations entering the medical world which always give me hope. I get excited about the possibilities.

When I learned about the work My Personal Therapeutics is doing with fruit flies to save lives, I was fascinated. I jumped at the chance to visit the lab, to meet the team, and see the fruit flies in action.

I leave the science to the scientists, but the concept behind putting someone’s unique cancer genetics inside 400,000 fruit fly avatars, and then running every single approved FDA library of drugs to see which drugs work to keep flies alive is mind-blowing and groundbreaking. To then be able to offer the specific drugs or combination of drugs to the patient is truly personalized.

This technology pioneered at the Icahn School of Medicine at Mount Sinai, New York is remarkable and I’m pleased it can be offered here in the U.K. From speaking to the team at My Personal Therapeutics, I know their initial focus is on Gastro Intestinal cancers as well as rare genetic ones. I have hope that this will widen in years to come.

The medical system has been built over a long period of time, and any changes in approach for a personalized one is taking a long time, and inevitably costs more in the short term.

Time and money too many of us don’t have.

I am encouraged to hear that My Personal Therapeutics is gaining support via grants and funding including from the UK government to take its work further. I’m hopeful that the speed of technological development will drive prices down, and offer many more people the chance to stay alive.

If you want to learn more about Mo and his fight with cancer, you can do so here