What you need to know about clinical trials: the patient perspective

The term ‘clinical trial’ always sounds like an abstract phrase in the world of cancer. We associate it with inaccessibility, last resorts and small odds, but they can also present opportunities and options for patients.

Mary Huckle has experienced multiple rounds of chemotherapy and was introduced to the world of clinical trials quite a long way into her cancer journey. She believes that talking about clinical trials more openly and learning about them early on in your diagnosis allows people to find options that might be suitable for them, understand the process and be better prepared. She believes we need to change the language around clinical trials.

What do you think are the common misconceptions about clinical trials?

The first misconception, and I had the same thoughts, is that clinical trials are often considered a last resort. There’s this idea that you’ve gone through all the approved treatments and now you should find a clinical trial.

I’ve known people who’ve had the same misconception, gone down that route and it’s been too late for them to be part of a clinical trial. Of course, it’s risky and the easier route is to see if the approved options work first, but all cancer treatments have their risks, and it’s a balance because you also need to be well enough to take part in a trial and you need time to find a trial in the first place.

I would suggest talking to your oncologist about them from the start, even if it’s just to understand the process.

Did you raise the topic with your oncologist, or did he raise it with you?

He mentioned it to me early in 2020 after my fifth or sixth treatment line and four or five rounds of the chemotherapy I was on at the time. He eased my feelings about it being a last resort by mentioning that there were still other chemotherapy options available as well if a trial turned out not to be for me. He suggested we start looking for one as it can take time to find something suitable - sadly you can’t just magic them out of thin air.

I’m lucky that he found one locally for me, but there’s no central database, so there’s a lot of manual work that needs to go on in the search. Unless you know where all the trials are being held, you’d be pushed to find one quickly.

What’s been your experience so far with your clinical trial?

The first thing that became apparent is that there’s a lot to do before starting a trial or even being admitted onto one. They assess your eligibility, which can involve various tests to make sure you’re healthy enough. That’s especially true for phase one trials. In my case, I had several blood tests, an echocardiogram, an ECG, they tested my eyes, and asked about dental health. They also required a liver biopsy, to be eligible, which can be a daunting procedure.

The pharmaceutical companies don’t want anything to tarnish the results of the trial, so you have to come off all other treatment beforehand, which I found very unsettling, especially as I didn’t know how long I had to wait. It ended up being about four months and for that time you and your oncology team are very much operating under the guidance and timelines of the pharmaceutical company. Your overall care transfers from your oncologist to the clinical trial doctors. This is something which I wasn’t aware of initially.

Your bone marrow memorises the different treatments you’ve had and the more you have, the more intoxicated and weaker your body becomes, so when patients are seeking clinical trials as a last resort, many are turned down as they’ve already been so heavily treated. Also, to prevent any interference with test results, you don’t have any contact with anyone else on the trial, and there are certain complementary therapies and supplements that you can’t have either.

Even so, to date I’ve had two CT scans and the last one showed a 30% reduction in the size of my liver tumours since starting the trial. They use target areas and tend to focus on the worst affected. All three of mine are responding well and at the moment the other areas are also stable.

What advice would you give to anyone considering a clinical trial?

It’s worth noting that because a lot of the information about trials is confidential, your own oncologist won’t necessarily know much about it, so you communicate directly with the new team who in turn communicate with the sponsor, usually being pharmaceutical company. There was a lot of back and forth in my case, as the eligibility process was taking longer than anticipated, so I would say it’s important to stay on top of them, especially after requesting to join.

What are the risks?

The main risk is that you don’t know what the risks are or what you’re really signing up to, especially if it’s a phase 1 trial. Mine is a phase 1 open trial, so they tell you what drugs they are using. In my case, there are two drugs being administered together, but I know that they are already being used elsewhere in isolation.

For me, there are lots of side effects, including many I haven’t had before. As an example, in the first few days after each treatment, I get a sore throat and it’s hard to swallow. I will also experience a tummy ache, but while it’s working, I will stay on it. I am apprehensive as some side effects can be cumulative - like they sometimes are with chemotherapy. The new team monitor you very closely and they can stop the trial if your quality of life is too affected, so that’s always on my mind.

On a different note, I would say there is some sense that your body isn’t your own. I’ve already had two liver biopsies. Not the most pleasant procedures which also carry risks, and to which I don’t have any claim. The tissue they take is the property of pharmaceutical company, so you can’t ask to have it tested elsewhere for different mutations, for example. Of course, all trials are different, so the above might not apply all the time.

That said, in addition to giving you options, there is also the feeling that what you’re doing will also help other people in one way or another, and that’s amazing.

At Beauty Despite Cancer, we are privileged to be part of a community of people who share their stories to support others on their cancer journey. Our skincare products aim to soothe the myriad of side effects that different treatments can cause, and have been created by listening to your wants, needs and feedback. If you would like advice on which products might suit your needs or if you would like to tell your story, contact us any time.