Guest blog: Taking part in clinical research

My name is Denise Bates, I am 53 and living with stage 4 advanced liver cancer and stage 3 breast cancer. I am from Liverpool, living in Birmingham, married, and mother to two boys aged 19 and 14. I am a former NHS accountant. This is my story.

Liver cancer is one of the top five deadliest forms of cancer. Advanced liver cancer prognosis is two to three months. The chance of making it to five years is 12% and the treatment options are few. I was 48, working for myself as a childminder, normal busy chaotic family life. I did yoga, walked and had a reasonably healthy lifestyle.

My diagnosis

In July 2014 I had my first attack of flu like symptoms that continued randomly over the summer. I went to the GP mid-August. I was a 48-year-old female, no weight-loss, no history of drink, drugs, cirrhosis, I was not yellow. Blood test results came back showing nothing so they were repeated.

When these came back, I was given a leaflet for HRT- because I was a female of a certain age. GP blood tests are unlikely to find liver cancer as they do not routinely test for AFP, the liver cancer marker, which at the time was over 4000. I started having a pain when I turned over at night, something hard was pressing against the ribs. Fed up with waiting and feeling poorly again I went to A&E. More bloods, an x-ray, an ultrasound, more bloods as something was missed off the first lot, then a CT and MRI. There was a 9×11 cm tumour in the left lobe of my liver. Two weeks later I was on the operating table and the whole left lobe of my liver was removed. I was sent home to recover with 38 staples curving across my abdomen. The surgeons were happy, they felt they’d got it all. My AFP dropped to 25, I felt well and went back to doing some gentle yoga.

Six months later a routine CT progressed quickly to an MRI. There were 10 tiny tumours in the liver and I was handed over to Oncology. I was told there was nothing they could do, I had 6 months – may be 12 – to live. I was referred for palliative care, Personal Independence Payment (PIP) was applied for and I was sent home to put my affairs in order. There are very few successful treatment options for advanced liver cancer. I was also given details of a clinical trial.

Clinical trials

There are different levels and types of trial. Some are for new untested drugs to gather data on how successful they might be; others are for studies of current treatments but in combination with other therapies to see if they offer better outcomes.

Shell-shocked it’s hard to know what to do. On one hand you’re going to die, on the other your mind and fear is drawn to all the potential side-effects listed on the trial documents and it’s always the worst ones you focus on. You turn to Google to try to understand what it all means, but the bottom line is your life is on the line and the clock is ticking.

In order to qualify for trials, you have to rigorously meet the criteria of the study which can be quite restrictive. I agreed to the trial – a procedure called TACE with an inhibitor drug Sorafenib. To ensure I qualified another round of bloods, scans and E.C.G followed. During these tests for the trial the scans revealed metastases in lungs and central lymph nodes. The trial was no longer on offer, I didn’t meet the criteria. I was not prepared to go quietly, I challenged my Oncologist who uncomfortably agreed to try Sorafenib and TACE, just not under trial conditions. I did TACE twice, but they couldn’t embolise as the resection had reduced the blood vessel access to the remaining liver. I lost my hair, lost weight as the drug is an appetite suppressant at a time when you really need good nutrition, was incredibly tired, got the rash, painful joints, sore feet. I was alive but it wasn’t living.

Immunotherapy success stories started to appear in the press in 2016. I did an online course on Cancer Immunotherapy. The drugs were no longer holding my mets at bay, the left lung was growing, I was breathless struggling to complete everyday tasks without rest. I repeatedly asked for Immunotherapy but it was not (and still is not) available for liver cancer.

Looking into future trials

My Oncologist looked into future clinical trials – there would be a Stage 3 Trial – drug vs placebo – no guarantees of which you’d be given, which for me was not an option, I couldn’t risk a placebo in my current state or the wait for it to start, possibly five months away. There was a Stage 2 – drug only – Immunotherapy trial for Advanced HCC in Liverpool, my home town. When trialling a drug, the hospital has to comply with whatever constraints the drug company require which entails numerous site visits. The trial was eventually agreed and began at the end of September 2016 by which time, in anticipation of it starting sooner, I had been 10 weeks suppressant-drug free (recommendations are four weeks clear for trials) and the tumours in my lungs were growing.

What happened next?

Every three weeks from September 2016 I went home to Liverpool. The treatment days were long, it would start with a taxi just after 7am, the 8am train to Lime Street, bloods, consultation, infusion, taxi, train, home early evening. Scans every nine weeks were squeezed into these days as well to save another trip. The Clinical Trials Nurses were fantastic, you did not feel like just another person in the chair. I’d get a hug and they would try to get me through the routines of the day as quickly as possible to put me back on the train home to Birmingham along with endless cups of tea. Life returned to normal, my energy levels increased, I went back to yoga twice a week.

The side effects were minimal, a palm rash in the early days, heartburn/food sensitivity, joint pain. With my maths background, scan results revolved around the Recist score, something I could use to visualise the changes. My Recist score across five targeted tumours started at 212mm, at nine weeks 142.4 mm. By July 2018 – 119.2mm, 31 infusions, stable disease with evidence of continued shrinkage.  No lung nodules or masses, no new liver lesions. No long lasting, life-limiting side-effects which is a real possibility with immunotherapy as it stimulates your own immune system. I am privileged to have been trial patient no 1 and help make Immunotherapy a possible future treatment for advanced liver cancer with lasting results.

Finding Penny Brohn UK

Throughout this time, life had been about getting through the day, surviving the treatments, I hadn’t had the energy to consider anything else. It wasn’t until March 2017 that I found my way to Penny Brohn UK. With the possibility that immunotherapy would reverse my prognosis I became aware that cancer patients often struggle just as much after treatments are over. I wanted to explore what I could do before that happened.

Living Well with the impact of cancer course

We were a unique group on the Living Well course – on International Women’s Day – we were all female. The emotional support from talking, sharing, supporting was stunning, that you felt held by a group of strangers.

The Living Well course made me realise self-care was important, as a mother everything and everyone else always came first regardless of my dire health situation, I internalised my anger, frustration and fears. I came away from Penny Brohn with hope and a sense of direction, although given the choice at the time I’d have stayed there for good! In March 2017 I wrote:

To the awe-inspiring ladies at PB – from shy timid souls to stubborn feisty wise women. You make my soul sing. The companionship of women is the best medicine.”

Now what?

I am still learning to let things go, I notice the joy in little things that busy people miss; the giggling child, a stunning view. I make time for me, for activities that I can become immersed in – yoga, music, sewing, reading. It is ok to just be, to be kind to yourself, to recognise when you need to stop, to focus on what makes you happiest. I have joined a secondary cancer group – being able to talk with people who understand, to listen and be listened to and to be able to help through shared experience – group therapy is definitely my thing.

The whole approach doesn’t happen at once. Changes come gradually as you’re ready for them. My little green book of notes taken back in March 2017 have seen me through the 16 months of journeys to complete the clinical trial, trying to co-ordinate three medical teams and a further surgery for a separate breast cancer. I am still classed as a Stage 4 terminal patient, but from a six-month prognosis to still being here approaching my five-year anniversary I prefer to use ‘living with’ or Cancer Thriver and I am loving the extra life in my liver that I have been given.

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