Taking part in a non Hodgkin lymphoma clinical trial
At the age of 63, Mel Jones was diagnosed with a type of non Hodgkin’s lymphoma (NHL) called follicular lymphoma. His wife Ann had been through cancer treatment before, so he had some idea of what to expect. But Mel was offered the chance of taking part in a clinical trial and trying a new drug with fewer side effects.
In 2007 I noticed a lump in my groin. I had been doing a lot of work around the house and thought I had strained something. My GP told me it was a swollen lymph node and referred me to hospital to have it removed. I remember thinking that it didn’t look good and thought it might be cancer. A couple of weeks later, my doctor told me I had non Hodgkin’s lymphoma. I felt shocked and numb. I thought that I would fall apart, but Ann’s support helped to keep me together.
Agreeing to take part in a trial
My specialist offered me a choice of either the usual chemotherapy treatment or a clinical trial. The trial involved having a drug called Zevalin, which is a monoclonal antibody attached to a molecule of radioactive yttrium. This treatment is sometimes called radioimmunotherapy.
The doctor and specialist nurse went through the different treatment options and possible side effects. It was a fairly easy decision for me to make. Chemotherapy would mean losing my hair, whereas taking part in the trial meant I could keep my hair and I’m rather proud of my ponytail which I have been growing for the last 12 years!
The trial involved staying one night in hospital to have a drug called rituximab. A couple of weeks later I had the first of two Zevalin injections. I had this as an outpatient in the nuclear medicine department of the hospital. It was a relaxing environment with nice staff, and I got to listen to my choice of music! This all helped it to be a more positive experience. I feel fortunate that I didn’t really get any side effects from my treatment. I did feel a bit tired, but this may be due to the long journeys to and from hospital.
Life after treatment
Being part of a trial means I was followed up closely after my treatment. I still see my specialist every 3 months for check ups. They are pleased with how I am doing and there is no sign of the cancer. I feel well and keep myself busy with my different hobbies. I am really glad that I took part in this trial, and hope the results will help improve treatment for others in the future.
- In 2007, around 10,900 people in the UK were diagnosed with non Hodgkin’s lymphoma (NHL)
- There are many different types of NHL
- Doctors group NHL depending on how quickly it is likely to grow
- Low grade NHL tends to be slow growing
- High grade NHL tends to be faster growing
- Follicular lymphoma is a type of low grade lymphoma, and is the most common type of NHL
- Treatment includes radiotherapy, chemotherapy and monoclonal antibodies, depending on the type of NHL
- Zevalin (Ibritumumab) is licensed in the UK to treat follicular lymphoma. In 2008 the SMC (Scottish Medicines Consortium) decided not to approve this treatment on the NHS in Scotland.
- Trials are looking at Zevalin with chemotherapy for follicular lymphoma that has come back, and for other types of NHL.
There is information about non Hodgkin’s lymphoma on CancerHelp UK.
You can also read about trials and search our database of UK trials.
Sharing your story
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