Keith clinical trial experience

‘At the end of 2012 I was 36 and working in warehousing. I never went to the doctor and up until then I hadn’t needed to.

Quite suddenly I found that I couldn’t keep down food or water. I also had severe stomach ache and felt very tired. My sister, who is a critical care nurse, was insistent that I go to my GP.

My doctor said he thought I was constipated and, although I didn’t think this was the case, left the appointment. But I was now really worried that something was seriously wrong and looking back should have shared my worries.   

I was losing weight rapidly and over the next 3 months went from 14 to 11 stone. I got an abscess on my wisdom tooth so visited my dentist who said the infection was so bad he needed to refer me to a hospital dentist. He gave me some antibiotics to control the infection which I had an allergic reaction to, so I ended up in hospital rapidly.  

From that point, things moved quickly. I had some blood tests and the doctor noticed that my lymph nodes were swollen.

I had a CT scan and they then explained that they were going to carry out a liver biopsy. I also had a lymph node removed from the right side of my groin.

I was diagnosed with Hodgkin lymphoma, stage 4B.

I was asked if I would consider taking part in a German clinical trial comparing ABVD with BEACOPP

Keith

Because of my age, my consultant asked if I would consider taking part in a German clinical trial which was comparing ABVD with BEACOPP. He took a lot of time discussing the trial, explaining that it was a more toxic regime, but that it may be better to control my disease. However, it was explained that it could affect my fertility and discussed whether I wanted to freeze my sperm. I chose not to do this as I didn’t want children.

I researched the trial independently and decided that, not only was this potentially going to be a better treatment for me, but I was also pleased to be involved in something that could improve treatment for Hodgkin lymphoma in the future.  

I had several tests before starting the chemotherapy in 2013, including checks on my heart to make sure it was fit enough to cope. A PICC line was inserted and I was given warfarin to avoid clotting on my lung.

I had the BEACOPP for 6 months and remember that being a time of many hospital appointments. A PET scan a month after chemotherapy finished in September 2013 showed that I was in remission, but there were still a couple of small dots on my neck, so the chemotherapy was followed by weeks of radiotherapy to my neck.

I have now been in remission for over 3 years and my life has definitely changed. As a result of the side effects of BEACOPP, I cannot play football any more as my heart and lungs have been damaged. But I am determined not to let the lymphoma rule my life, and I am getting on with things, determined to live it to the full.

The message I really want to give to people is that if you think something is wrong, go and see your doctor. I thought everything would be OK, but that may not be the case. Get it checked out as soon as possible. And be forceful about how you feel and share your concerns openly.

Since treatment I have felt it is important to be open and honest with people about my health and think that the more people talk about cancer the better. But I have found that some of my friends find it very difficult, and struggle to know what to say. They seem to have changed towards me, but I don’t want them to change. I tell them to treat me just as they did before.

February 2017