Me and myeloma: Adrian’s story

Tell us a bit about yourself

My name is Adrian Cox and I’m 55. I’ve always held a passion for the great outdoors. When I wasn’t working as a researcher at the University of Southampton, I’d be sailing along the South Coast or cycling around the beautiful Hampshire countryside with my partner Olivia.

Can you tell us about your myeloma diagnosis?

In September 2019, I started to experience a pain in my ribs, tension between my shoulders and in my right arm. My GP thought I’d overdone the cycling and pulled a muscle. I was simply given pain relief.

I also thought the pain could have been caused by the anxiety of work – I’d been working on a big project – and the trauma of losing my dad Barry suddenly two months earlier. When the pain worsened, doctors thought it was a trapped nerve; although by Christmas I was in agony, curled up on our living room floor.

In January 2020, I had a blood test at my local GP surgery. When my GP called me into her surgery and said, ‘I don’t know how to tell you this, you have myeloma’, explaining it was blood cancer, I had the sense of complete fear. I was active, had no history of blood cancer in the family and was only 49.

A month later I was admitted to hospital barely able to get out of bed and immediately started an initial treatment of chemotherapy, VTD (velcade, thalidomide and dexamethasone). After a couple of months, I was feeling fatigued and with the almost obligatory ‘chemo fog’.

Close support from Olivia got me through day-to-day life, with immeasurable clinical support from my Macmillan Clinical Nurse Specialist who was often armed with the always helpful information leaflets from Myeloma UK. These helped me understand what was happening and what to expect, typically the inevitable side effects.

I very quickly gained an understanding of the range of myeloma-focused drugs available to my treatment pathway. Knowing Myeloma UK is campaigning for their approval was heartening. You don’t realise the level of support from charities until you need them.

What has helped you get through your initial diagnosis and the ups and downs of treatment?

After the shock of diagnosis, sometimes gruelling treatment and continual emotional rollercoaster, one of the things that kept me going was cycling.

Three months into my treatment, I started using my turbo trainer, a kind of exercise bike using your road bike. I had lost fitness from both the disease and treatment and it took time to build up my strength. This said, each time I cycled I definitely benefited from that rush of endorphins.

In September 2020, I had the first of two stem cell transplants. My second stem cell transplant followed just before Christmas, with a maintenance chemotherapy of lenalidomide and dexamethasone commencing in January 2021.

Like everyone else I had been stuck in the house for months due to the pandemic. In March 2021, as the lockdowns lifted, I started cycling out on the road again, in the countryside close to where I live, accompanied by Olivia. It was hard going at first as treatment and lack of road time was taking its toll.

However, cycling also gave me a sense of wellbeing. For so long, it had felt like my treatment had controlled my life, with blood tests and scans, but when I was cycling I felt like I had regained my freedom. This gave me a great sense of achievement and, furthermore, I was building my strength. It was this fitness that my clinical team felt helped me cope better with treatment. It was also a form of mindfulness. With my mind focused on riding the bike I wasn’t worrying about the myeloma.

My doctors cautioned me not to overdo it and to listen to my body while cycling since I still had a battle raging inside as my body dealt with treatment. It definitely helped to monitor my heart rate using my smart watch so I could see if I needed to ease back. I should confess I often didn’t listen. Before I knew it, I was regularly doing 30+ mile round trips.

There were ups and downs around my treatment. In October 2021 I became severely refractory which sadly impacted not only on my cycling but range of activities. It was a frightening time. The cancer was as bad as it had been when I was first diagnosed requiring radiotherapy for lesions on my hip and throughout my spine.

Thankfully following this I was given a new treatment called isatuximab, which quickly demonstrated significant reductions in my cancer and I was back on my bike three months later. This time with a huge word of caution from my clinical team, my haemoglobin was significantly reduced. Challenge set.

In June 2022, we travelled to France and cycled up two mountain passes from the Tour de France, Col d’Ornon and Le Lautaret, riding nearly 60 miles in a day. The rides were hard going although with a lot of willpower and perseverance I had a humbling feeling at the top.

I continued to extend my cycling, averaging 3,500 miles per year in 2022 and 2023, including a further trip to the Alps in May 2023. Then in October 2024, when I cycled to the summit of Mont Ventoux, it was a pinch-me moment and a firm tick on my bucket list. I will confess I did shed a tear. Standing with Olivia and our bikes at the summit of a mountain in the French Alps looking at the world spread below me like a blue and green carpet, I felt on top of the world.

Sadly, 2025 was a brutal year. After an MRI scan found lesions, I was put on a newly-approved treatment called elranatamab. When it became clear elranatamab wasn’t able to reduce and maintain the myeloma it was decided I should undergo the ‘bridging treatment’ VDT-PACE. On the first round I ended up with a PICC line infection, fighting a fever and arrhythmia, which was really frightening. I remember one of the nurses in charge saying, ‘I promise you will be walking out of here in a week. You are fit, you will get through it’. She was right, I got through it.

After a third round of VDT-PACE, my MRI came back clear. I can’t describe the elation I felt. I am now on selinexor and my paraproteins are unmeasurable. This comes with an almost obligatory nausea which has been horrendous, but it’s not stopped me turbo training!

My goal this year is to get back out on the road and put 2025 behind me. Regaining my fitness is going to be a ground-up task. I’m planning to do a vintage cycle ride in the Lake District in May and I’d like to do a bit more cycling in the Alps. I have some unfinished business with some of the famous climbs there.

My partner thinks I’m a crazy but I’d also like to drive to the Bianchi factory outside Milan and share my story with them: the story of a man with an incurable cancer who cycled to the top on Mount Ventoux with very low haemoglobin on one of their bikes. This bike has done so many miles with me. I’d love for them to put it in their museum in exchange for my dream Bianchi bike. You never know. It’s worth asking.

What message or advice would you give to someone who has just been newly diagnosed?

Living with myeloma, especially in the last year, has been a huge emotional challenge. My advice to anyone who is going through myeloma, well any cancer, is to find the hobby that brings you joy and offers you escapism. It will keep you mentally strong and resilient. Since 2021, I’ve done some 11,000 miles. Cycling helps me feel like I can live a normal life, releases those valuable endorphins and is a reminder that there is still a life to be fought for.