John B

In 2020 I noticed blood in my pee which took me to the doctor. A CT scan was carried out which led to a diagnosis of stage 4 kidney cancer. The following month I underwent a left nephrectomy (removal of the left kidney). 

I had a series of intense investigations, including multiple biopsies of my liver and spleen to check whether there were any metastases. In 2022, I had my spleen removed and a biopsy from this resulted in a diagnosis of peripheral T-cell lymphoma not otherwise specified. 

I was to be treated with six cycles of CHOP chemotherapy and in March 2023 I was told I was in remission. But in 2024, after 18 months, it was clear that something had changed. A PET scan revealed that the lymphoma was back. I started six cycles of GEMOX chemotherapy which is made up of two drugs, gemcitabine and oxaliplatin. 

Unfortunately, I required several admissions for treatment as the chemotherapy wasn’t controlling the lymphoma. I had temperature spikes, shakes in my hands and arms and weakness in my legs. 

By April 2025, I was told that treatment would now be palliative, beginning with a course of the chemo drug etoposide and the steroid prednisolone. I had a discussion with my consultant about the possibility of having a stem cell transplant, but this was considered too risky as I had only one kidney and no spleen. I had a conversation about lenalidomide as a treatment, but funding would be needed and this never came to fruition. 

Clinical trials had been mentioned by one of my consultants, and I now went on the internet to search for any clinical trials that may be suitable for me, including Lymphoma Action’s TrialsLink. I found three that might be possible and got in touch with my nurse. I had identified the Step Pharma clinical trial but after a series of investigations, including bone marrow and soft tissue biopsies, I was told that my kidney function meant this trial would not be suitable for me. 

But I was determined to find a path forward and continued my search. At the end of 2025, and at the age of 76, I was successfully enrolled in the Cell Centric clinical trial, which was testing a regimen of lenalidomide and CCS1477. I have found this quite an easy regimen with the only side effect being a little bit of numbness. For me this trial has been remarkable as after five cvcles, PET scans have confirmed a complete metabolic response. So far I have had nine cycles, but I understand they will carry on for as long as they want me to, being closely monitored with blood tests, observations, ECG and PET scans. 

Looking back, this progress stands as a testament to the vital role of clinical research. I did have to persevere to get onto this trial, but I am enormously grateful to have access to this cutting-edge trial. Today I live a fully active and happy life although in truth I never felt like I was near the end of life. 

I feel so much gratitude for the care and dedication, not only to the front line clinicians and nurse, but to all involved in research. I hope the data collected will not only help me, but also others who have a cancer diagnosis. 

If people are considering a clinical trial, you need to place your trust in the clinicians, as that makes all the difference. And I can honestly say I don’t feel like a guinea pig at all; I just feel fortunate to be looking forward to life, including talking about holidays. 

It must be said that this journey has been made more bearable with the love and support of my wife Sally and our extended family.