In 2012, Bob was diagnosed with myeloma, a type of incurable blood cancer. He was 52 years old. By early 2022, he had exhausted all standard treatments.
Thankfully, in 2022, Bob joined a clinical trial at The Royal Marsden, to test a new targeted drug called Teclistamab. He has now been in remission for over three years.
Here, Bob tells his remarkable story.
Joining the MajesTEC-2 clinical trial
“By 2022, I had tried lots of different treatment options, but they had all stopped working for me. My Consultant Professor Martin Kaiser and I discussed suitable clinical trials and within a few weeks he called me to tell me about a place on the MajesTEC-2 trial, which he thought I'd be a perfect candidate for.
“The MajesTEC-2 trial is testing the drug Teclistamab - a type of immunotherapy treatment - in combination with several other existing drugs, and we new the earlier study (MajesTEC-1) using just Teclistamab, was showing very good results.
“Next thing I knew, I was at The Royal Marsden in the Bud Flanagan Ward in Sutton having all the pre-trial tests.
“When I started the trial, it involved being given Teclistamab in a staged dosage. You have a tiny dose, then you have one that's five times bigger. Then you have one that's five times bigger than that – all over the course of two weeks. It was delivered via a 30 second injection into my stomach.”
After 11 years of treatment, Bob's cancer finally goes into remission
“After two months of being on this treatment, it was clear that one of my markers, the light chains*, had decreased to undetectable levels. This had never happened before, in the previous 10 years of treatment. I'd never got anywhere near that sort of remission.
“Dr Kevin Boyd, who runs the trial at The Royal Marsden, said it could take a full year for my paraprotein markers* to reach zero, but that doesn't mean the treatment isn’t working.
“And that's exactly what happened. After a year, the cancer was undetectable in my blood. I had a bone marrow biopsy and it showed minimal residual disease negative (MRD Negative). MRD Negative means that no signs of cancer cells have been found. It doesn't mean you're cured, but it does mean you’re in the highest form of remission you can find. This was my first complete remission after 11 years of continuous treatment!
*What are paraproteins and light chains?
Paraproteins and light chains in the blood or urine are one of the most common features of myeloma. Tests for their presence therefore play a key role in diagnosing and monitoring myeloma.
Paraproteins
Myeloma arises from plasma cells which are found in our bone marrow. Plasma cells form part of our immune system, producing proteins called antibodies to help our body fight infection.
In myeloma, these plasma cells become abnormal and produce a large amount of an antibody known as paraprotein. Myeloma is often diagnosed and monitored through the measurement of paraprotein in the blood or urine.
Light chains
Light chain markers are abnormal proteins found in the blood, used in the diagnosis and monitoring of myeloma. When making antibodies, plasma cells normally make more light chains than required. Therefore, as myeloma cells produce paraprotein they also produce excess amounts of light chains.
“Minimal Residual Disease (MRD) Negative doesn't mean you're cured, but it does mean you’re in the highest form of remission you can find. This was my first complete remission after 11 years of continuous treatment!”
Four years later– Bob's life beyond the trial
“After a year of being on the trial, I came through the worst of it. I've just had my third annual biopsy, and it's come back negative again. I'm into my fourth year now on the trial. Still no sign of the cancer!
“No one knows how long this will last. I’m on Facebook groups for people with myeloma and chat to others who are on clinical trials all over the world. There are people like me who have been on this trial drug and have been in remission for four and five years. They're all taking the drug regularly.
“I get constant respiratory infections and have polymyalgia (muscle pain and stiffness in the shoulders, neck and hips) which may have been induced by the drug, and I see a rheumatologist about this. It's all relative though, I can't complain. I count my blessings that the trial effects haven’t been any worse and I’m alive to enjoy my lovely, growing family.
"And it doesn't stop me cycling. I've been cycling over 100 miles a week this year which was preparation for the 1,000 mile challenge I took on this summer from Land's End to John O'Groats."
Thanks to his trial treatment, Bob has seen his son get married and has become a grandfather to a second grandchild – things he thought he would never experience after his diagnosis in 2012.
The importance of research
“I think the most important thing about clinical trials is the early access to effective drugs for patients who might have nothing left for them. The study results then accelerate the access for everyone else. That's what makes the real difference to so many cancer patients.
“Research and clinical trials literally mean the difference between life or death. The only reason I am still alive is thanks to the advancement in research and the development of new drugs over the past 10 years – and the wonderful teams at The Royal Marsden who run the cutting-edge trials.”
Thanks to donations from our supporters, we are able to support research and clinical trials that help people like Bob, everywhere.