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Carol clinical trial experience

Carol's experience of several clinical trials

Carol clinical trial

Some people participate in several clinical trials if their lymphoma relapses several times or doesn’t respond to treatment.

Carol was diagnosed with Hodgkin lymphoma in 2004 at the age of 26. The standard treatment given at the time was not successful and after further chemotherapy, an autologous stem cell transplant (using her own cells) and radiotherapy, Carol’s lymphoma was still not in remission. She entered a clinical trial of a new treatment (an anti-CD30 antibody) in 2006 and had a partial response. In 2008, her lymphoma began to grow again and she entered another trial, this time using a new radioimmunotherapy drug, which uses an antibody to deliver radiation directly to the lymphoma cells. A scan showed she still had some lymphoma. After some other treatments also didn’t put her lymphoma into remission, there were no other treatment options available. In 2011, Carol was offered brentuximab vedotin on a compassionate use basis as a named patient.

Brentuximab-vedotin is a targeted therapy that uses an antibody to deliver strong chemotherapy to the lymphoma cells. When there is no suitable clinical trial and they have no other treatment options, occasionally a drug company will allow some people access to experimental drugs on a compassionate use or named-patient basis. This is usually while the drug company is waiting for approval of a drug based on trials that have already been done. Based on the outcomes for people in phase 2 trials, brentuximab vedotin received a European marketing authorisation in 2012 for the treatment of some people with relapsed or refractory Hodgkin lymphoma.

Carol says: ‘I found that if I just took things a day at a time, that I could leave all the worrying to the specialist. I know I am no health expert, so I tried to focus on what I knew about – which in my case was being a freelance musician. It was almost as though responding a little to each treatment so far gave me the time for brentuximab to be available for me. I started treatment with brentuximab in 2011. I still recall being told I was in remission for the first time in 7 years, which was overwhelming. This allowed me to prepare for an allogeneic stem cell transplant (using donor cells).

Decisions on my treatment have always been my own. I’m very close to my parents and brother, and they have been unbelievably supportive in backing me up 100% in every decision I made. Now that I am through treatment, including an allogeneic stem cell transplant, I get a lot more emotional. Before I don’t recall crying, and was just focused and determined. Perhaps that was my coping mechanism.'

Carol is kindly sharing her lymphoma story for our 2019 BBC Radio 4 Appeal - find out more here, including how to listen and donate