One of the patient booths in the Novartis Pavillon retells Myerson's patient journey. It includes her father and children.
Published on 01/06/2020
When Claire Myerson talks about how breast cancer affects her, two things stand out: her zest for life and her candor about the physical and emotional challenges of living with the disease.
Myerson, 53, lives just outside Oxford in the UK. She was diagnosed with cancer 10 years ago. The illness upended her life. She received treatment for several years, but after learning that the cancer had spread to her bones, she made the difficult decision to leave her job as Chief Information Officer at a UK healthcare company. Since then, she has devoted her energy to living life as well as possible and doing what she can to advocate for women confronting the same fearsome illness.
Myerson’s experience as an IT expert in the pharmaceutical industry means she brings unique perspectives to different types of advocacy. She advises patient organizations in the UK, helping to demystify and destigmatize cancer. She raises funds for cancer research. She contributes to the design of clinical trials to test experimental new treatments in patients. And she shares her story of living with cancer with other patients, with the doctors and nurses who treat them, and with the research scientists trying to develop new treatments.
Her story is also featured in the Wonders of Medicine exhibition at the Novartis Pavillon. On a recent visit to the Pavillon, Myerson shared her perspectives on cancer, advocacy and life in general. Here is an edited excerpt of discussions with her, held as part of a panel discussion together with industry experts.
How has cancer affected your life?
The answer to that question is quite an involved one. I was diagnosed with what’s called HER2 positive breast cancer in 2013. Then, in 2016, unfortunately I discovered that the cancer had spread to my bones. So, I have it in my pelvis, my ribs and my spine.
Since that diagnosis, I have had the full range of available treatments, including chemotherapy, radiotherapy, a mastectomy and reconstructive surgery. And for the past seven years now, I’ve had intravenous drug treatments. Every three weeks I go to the hospital in Oxford and I have what’s called a targeted chemotherapy drug. And I will continue to take it for as long as it works. At the moment, it’s working and it’s stopping the cancer from progressing.
The cumulative effect of that treatment is mentally and physically exhausting. I really struggle to sleep. I often have pain. Sometimes I have menopausal symptoms, which have been brought on by the treatment. Sometimes I can’t sleep because of the anxiety and the fear of what’s happening to me. The drug upsets my stomach and makes me very nauseous. It causes horrible nail and skin problems. And it makes my eyes and my nose stream and gives me strange neuropathic pain in my feet and my hands, which is like being stung by a thousand bees.
But all of that being said, I am still here. The side effects from the drug are tolerable. And crucially, it’s keeping me alive. And my best hope has always been to stay alive long enough for science to come up with something else that can keep me going for longer.
That’s one reason I want to do what I can as a patient advocate. Talking about my experience hopefully continues to inspire scientists and supports the kind of research and development work that allows me to still be here. It’s given me really precious time to live and continues to give me hope for the future.
You also use your experience as a cancer patient to contribute to the research process. What motivates you?
I wanted to get involved because I think it’s really important to use plain language so that patients can fully understand the treatment and the likely impact on them. So, they can give their consent (when offered a chance to join a clinical trial) – to say yes or no, “I agree to taking this treatment, having understood what’s going to happen to me.”
If that’s the outcome that we’re trying to achieve, then the starting point is right at the very beginning, when the drug is just an idea. And I believe it’s really important to have the patient voice at every stage of the drug development cycle, with researchers adapting what they are doing throughout the process. Because the ultimate outcome, in terms of the impact on the cancer and on patients, will be so much greater and more effective.
I can give you a couple of examples from my own personal experience about side effects and consent. If you have such severe diarrhea, for example, that you literally cannot go outside or do anything in your life because you need to be close to the toilet the entire time. That, I would argue, is not an acceptable quality of life.
If you need to take other drugs to counter the diarrhea and become so constipated that you feel sick every day, and you have to go through that every three weeks for months or years, you might legitimately say, “Actually, no. That’s not for me.”
Another example is weight gain. I was involved recently with a clinical trial panel looking at this side effect of an experimental drug. Believe me, when you’re going through cancer treatment and you’re losing your hair and your weak immune system makes you susceptible to every illness going, then your body image is quite important. A drug that is going to be effective against your cancer but is going to cause enormous weight gain is definitely going to give patients pause for thought.
