NHS Cancer trial cancelled due to COVID-19

Carol Player’s story

Carol Player is a 57-year-old wife, mother, and loving grandmother of twin boys, Jack, and James (aged three years). She lives in Streetly, near Sutton Coldfield in the West Midlands.

Five years ago, she accidentally sprayed perfume in her eye while getting ready for work as a mobile hairdresser. She went to the Birmingham City Hospital a few days’ later to get it checked out after she started to lose some vision in that eye.

Carol was referred to a consultant at the renowned St. Paul’s Eye Unit at the Royal Liverpool University Hospital who, following tests, diagnosed ocular melanoma, a rare eye cancer. The cancer affects just six in one million people in the UK every year.

It was recommended that her right eye be removed as soon as possible and the following day, she underwent the procedure. While it was devastating to lose her eye, Carol and her family knew that it had saved her life and were grateful it meant she was now cancer-free.

With the help of her family and friends, Carol made a good recovery, coping well with only being able to see out of one eye (often referred to as ‘monocular vision’). Despite the fact she was struggling emotionally with her shock diagnosis, she managed to stay strong, courageous, and positive.

However, in November 2019, after nearly five years, Carol was told the devastating news during a routine six-monthly scan, that she had spots on her liver and the cancer had spread (metastasised).

Her doctors advised her best course of action was to resection her liver, taking away 14% of the organ to remove the diseased area. The procedure (known medically as a hepatectomy) was successful; but just three months’ later at a follow-up scan; more spots were found in several areas on her liver, which meant another resection would not be an option.

Delcath clinical trial hope

Carol’s consultant told her about a pioneering clinical drug trial available on the NHS called chemosaturation therapy, which uses the chemotherapy drug melphalan.

The treatment, called Percutaneous Hepatic Perfusion (PHP), known as its brand name ‘Delcath’ has been proven to be highly successful for patients with ocular melanoma, helping to significantly shrink cancerous tumours in the liver. Some malignant tumours have even disappeared from the liver altogether.

The Delcath therapy is already a first line of treatment for patients with ocular melanoma and uveal melanoma (another type of eye cancer) in European countries including Germany and the Netherlands, helping to prolong people’s lives.

The treatment involves chemotherapy administered through the groin to saturate the liver. It does not affect the rest of the body, so there are fewer side effects and patients do not lose their hair.

Doctors told Carol she was a suitable candidate for the treatment, giving her and her family tremendous hope. But unfortunately, just before she was due to start at the Clatterbridge Cancer Centre in Wirral in March 2020, the NHS cancelled all clinical trials due to the COVID-19 pandemic.

The only way to get the groundbreaking therapy would be to pay for it privately at a cost of £40,000 per treatment. With at least four sessions required, the total amount of money Carol needs for potentially life-saving treatment is £160,000.

Carol says:

“Our hopes were dashed, and I was in floods of tears. I felt devastated and thought my life was over. Unless I can raise the money to pay for the treatment privately, I will die. All I could think about was ‘how are we going to afford this?’

“I’ve worked hard all my life from the age of 16, paying my taxes. I always assumed that if the worst happened, the NHS would look after me. But I feel as though the Government has taken my human rights away and the NHS has deprived me of the treatment that could save my life.

“Regardless of whether you are a coronavirus patient or a cancer patient, we all deserve the same chance to live.

“I’m not ready to die. I’ve got my two young grandsons to live for and I’m determined to stick around for as long as possible to watch them grow up.”

Supporting Carol

Mary Smith, Novum Law’s patient safety expert, is supporting Carol and other cancer patients, including Wendy Peake, another ocular melanoma patient, whose potentially life-saving treatment has been delayed, or cancelled indefinitely, due to the COVID-19 pandemic.

Mary says:

“There are limited treatment options available to people with rare diseases, such as ocular melanoma. That is why innovative therapies, like Delcath, which are being used successfully in other countries to shrink and eradicate tumours and prolong lives, are so important. They represent a lifeline for patients, like Carol.

“To have that lifeline taken away is absolutely devastating and to be told by doctors that it’s sink or swim and if you can’t pay for the treatment privately, there is nothing else that can be done, it’s terrifying for people with cancer and their loved ones.”

Carol has managed to raise £40,000 to pay for one cycle of treatment at the Spire Southampton Hospital by cashing in all her pensions. The results have been impressive. Doctors found that three of her tumours have disappeared and her other four tumours have shrunk significantly.

Carol’s family and friends have all rallied round and her son, Adam set up a Go Fund Me page to raise money for further treatments, saying “don’t worry Mum, we’ll keep you alive.”

Through the fundraising efforts of her family and friends and generous donations from the public, Carol was able to pay for another treatment, but she desperately needs another £80,000 to pay for two more cycles and complete the course.

Carol says:

“I would like to say a heartfelt thank you to everyone who is helping me by taking part in fundraising activities and doing everything they can to raise awareness of my situation. To kindhearted strangers who do not know me personally but have heard about my story and donated to my fundraising page, you are giving me the chance to live, and I can’t thank you enough.”

Please click here if you would like to donate to fund Carol’s treatment.