Personal experience
Andy's story
Andy explains how being on a clinical trial for his relapsing follicular lymphoma has been life-changing.
I was diagnosed with follicular lymphoma in April 2015. Unlike many follicular lymphomas, mine comes back more frequently and aggressively than most.
Over the last ten years, I’ve had five major treatments. I’ve had chemotherapy twice, firstly with R-CVP, then R-CHOP. As the lymphoma had come back fairly quickly, my treating team thought that an autologous stem cell transplant, using my own stem cells, would be a good idea.
The stem cell transplant was tough but gave me three years in remission until I relapsed again. This time I was given a regimen called R2, which is a combination of lenalidomide and rituximab. R2 lasted for about a year.
I was now beginning to realise that I had more of a problem with follicular lymphoma than most people. Things were getting tricky, and I worried that options may be running out. I have been keeping up-to-date with latest treatments and realised that CAR-T cell therapy and bispecifics were showing good results, but I was also aware that these treatments are for high-grade lymphoma and not yet applicable to people in the UK with follicular lymphoma.
When I relapsed again, my doctors started talking about bendamustine plus rituximab. I was worried that my options were dwindling and so asked about clinical trials. I thought this was a way for me to have some of the newer treatments. My consultant was very supportive and organised an appointment at the Christie Hospital: that was the nearest centre where they have a specialist unit with suitable clinical trials for me. Initially my doctor had told them that I was interested in CAR-T cell therapy and at that first consultation I met with two doctors, one of whom was a CAR-T cell therapy guru. My medical history had already been sent over, and at that first meeting, which lasted around 2-3 hours, we talked over my medical background in great detail.
“After that first consultation I decided I wanted to have CAR-T cell therapy. I would then need be assessed, which included lots of scans, blood tests and evaluation to see if I was eligible.
The tests raised some concerns; I had quite extensive disease and some of the lymphoma was pressing on my right kidney, and they were worried about whether I’d stay well enough to get to re-infusion of the cells. In addition, the trial was randomised, with only 50% of people going onto the CAR-T cell therapy arm. This was incredibly disappointing, but I had to take their advice, and hopefully CAR-T will still be an option one day. They then talked to me about bispecifics and the REFRACT trial. The trial was recruiting and, following a scan and biopsy, it was confirmed that I was eligible for it. REFRACT is a randomised trial where 50% of people receive a new treatment and 50% receive a standard treatment chosen by their doctor before they enter the trial. Incredibly, I was to have the experimental treatment, which was epcoritamab with lenalidomide. I felt like I’d won the lottery!
I had a lot of abdominal disease and DVTs (deep vein thrombosis) in my left leg had left it 4kg heavier due to fluid build-up. My treatment was starting to get quite urgent, so within a week I was ready to go. I had previously been given prednisolone (a steroid) to tide me over, which had a dramatic effect on my nodes. The trial is 12 cycles of 28 days each. Epcoritamab is a weekly injection for 12 weeks, then a further nine injections at the start of each remaining cycle. The steroid dexamethasone is given with the first four epcoritamab injections; 16mg for four days gives quite a high, sleeping can be a challenge, followed by a bit of a crash. The lenalidomide is taken as a pill for 21 days each cycle, followed by a 7-day break. The first three epcoritamab injections are tiny to check for adverse reactions, something like 1mg, 2mg and 3mg, then it’s 48mg each time. The whole treatment is so closely monitored, and I see the research nurse every time and have neurological tests to keep an eye out for reactions. I have a full examination and discuss how everything is going with the doctors. I also have blood tests before the next treatment to ensure I am fit enough for the next dose.
“My care before the clinical trial was outstanding, but this feels like another level.
As part of the trial there is a scan at six months. The team offer an option to have a scan at three months which I took up. That first scan showed a complete metabolic response and the later scan showed the same. The most fantastic thing about bispecifics is that for me it was a really easy treatment. Very much easier than the chemotherapy and stem cell transplant I’d had over the years. So far things have turned out far better than I could ever have imagined and to date I am feeling really well.
I would say that if you want to be involved in a clinical trial you may have to be prepared to travel. So far, I have done around 4,000 miles to attend appointments and have the treatment. Expenses are paid for some clinical trials but not for this one. However, things could not have gone any better and I am so delighted to have been able to have this treatment.
I was talking to one of my consultants who said that Lymphoma Action get involved in NICE evaluations by providing patient representatives. I was really interested in being involved and in doing so it feels good to be part of the process of making newer drugs available. I feel convinced that bispecifics will have a huge impact on lymphoma treatment in the future.
I would say to people, look at clinical trials sooner rather than later although you may not get the option you want first time. On the Lymphoma Action website, and searching more widely, you can get a sense of how many trials are going on at any time. Talk to your doctor about it if it is something you may be interested in.
If you’re thinking of taking part in a clinical trial, take a look at the Lymphoma TrialsLink section of our website. We have just updated much of the information in this area, which explains what is involved in clinical trials, drug development approval and personal stories. It also contains our database of lymphoma clinical trials.
