A father of two who was given only months to live after being diagnosed with terminal colon cancer six years ago, has told how he managed to obtain a combination of cutting edge treatments in Japan to survive and become “disease free”.
Now Matthew Dons wants to help other cancer patients and show how they can find other options for treatment that they may not have originally been offered.
“I often see in Facebook groups people have been told they are inoperable or that they don’t have the right ‘type’ of cancer for immunotherapy,” he told i. “That’s not really the truth. If the surgeon says their patient is inoperable, what they really mean is that they can’t do the operation at their hospital at that time.
“But maybe another surgeon at another hospital using a different technique could. It’s trying to educate people, helping them find out about things I wish I had known at the beginning.”
The freelance business consultant was a healthy 36-year-old when doctors found a large tumour almost blocking his intestine which a CT scan showed had spread to his liver and lymph nodes. An oncologist in Norwich told him it was terminal after another scan showed it had also spread to the abdominal membrane, making it particularly difficult to treat.
Mr Dons was told the average survival time for someone in his condition was between seven and nine months as the prognosis for people with such a cancer is often poor.
“I actually felt sorry for the GP, who had to give me the news in a five-minute appointment,” he said. “It was someone I hadn’t actually seen previously so had just met him. I walked out of the surgery with tears streaming down my face but remember thinking ‘that poor guy’.”
But with his children aged just two and seven, he refused to accept his fate. NHS treatment would have involved urgent surgery followed by chemotherapy. But Mr Dons, who divides his time between the UK and Japan, was concerned that a cancer drug called Avastin, was not widely available in the UK. So he opted to seek out other forms of treatment abroad that were not available to him had he stayed in Norwich.
“I really wanted to live for my kids so started studying as much as I could on potential treatments, without really understanding what I was studying, going on Facebook groups for different cancer types, asking people about what treatments they had, the side effects they got and the results,” he said. “I was eventually connected to an immunotherapist in Japan, who does a treatment called adoptive cell transfer.”
The technique, also known as cellular immunotherapy, is only available in a handful of places as a lot of countries, including the UK, believe there is not enough evidence yet to offer it more widely.
What is adoptive cell transfer therapy?
Adoptive cell transfer therapy, or cellular immunotherapy, uses the cells of our immune system to eliminate cancer.
It takes advantage of this natural ability and can be deployed in different ways, such as Engineered T Cell Receptor (TCR) Therapy, Chimeric Antigen Receptor T Cell Therapy (CAR-T) and Natural Killer (NK) Cell Therapy.
Mr Dons’s immunotherapist used NK Cell Therapy. Although cell transfer therapy is not widely used in the UK at the moment, the NHS provides CAR-T therapies for children and young people with a form of leukaemia.
The National Institute for Health and Care Excellence, which approves treatments, has also recommended CAR-T therapy for adults with two types of lymphoma in England.
Scientists at University College London (UCL) have also established the CAR T-cell programme, the most comprehensive in Europe, which continues to actively recruit patients with T-cell malignancies, myeloma, and neuroblastoma to build a stronger evidence base for such treatments.
Cellular immunotherapies are changing the outlook for cancer patients according to Dr Philip Greenberg, an internationally-recognised expert in cancer immunotherapy at the Fred Hutchinson Cancer Research Centre in Seattle.
“Today, cell therapies are constantly evolving and improving and providing new options to cancer patients. Cell therapies are currently being evaluated, both alone and in combination with other treatments, in a variety of cancer types in clinical trials,” he says.
Mr Dons said he hoped the NHS would eventually offer more people cell transfer therapies in the future as he credits Japan’s “world leading health system” for saving his life.
“My Japanese doctor’s method concentrated on the NK-cell, which can attack cancer cells that are hidden. That means you get a longer response from it. And the treatment is autologous, which means it’s made from your own white blood cells, so you don’t have the danger of an allergic reaction where your kidneys pack up and you die in intensive care.”
He was able to benefit from a range of other treatments which he helped pay for with an online crowdfunding page online set up by his sister.
They included immunotherapy, metronomic chemotherapy and radiotherapy. He also had hyperthermia therapy, a type of medical treatment in which body tissue is exposed to temperatures above body temperature, helping chemotherapy to get to hard to reach areas. And doctors agave him metabolic therapy, which interrupts the production of energy in the cancer cells rendering them more sensitive to other cancer fighting approaches.
“Two years ago I got to the point where I was classified NED – no evidence of disease,” Mr Dons said. “I was strongly recommended to do another year of treatment to be on the safe side, which I did. I still do my monthly blood tests and regular CT scans, down to every six months now, which is amazing.”
Mr Dons has even managed to lose colostomy bag he had for five years after the surgery. “Thirteen surgeons in Japan turned me down to do a reversal, saying it was too dangerous and the outcome would not be good, but fortunately I found a surgeon who would do it” he said.
“It was a success and I’ve been without the colostomy bag for 14 months now. That was a really big deal as having the bag made it hard to have much of an active life. I couldn’t do a lot with my daughter Jessica, who is 8 now, when she was younger.”
“I’m hopeful for the future,” he added. “I’m focused on helping other patients now. Things are looking bright.”
Mr Dons has created a free online course to help other cancer patients seek alternative treatments abroad at www.makecancerhistory.jp/cancer-course/
