Every myeloma patient has a story to tell. And every story captures a very personal experience of our incurable blood cancer.

Living with myeloma is more than navigating the physical challenges of illness and treatment. It is also about finding a path through mental health issues: toxic thoughts, rollercoaster emotions and imperilled well-being.

Because myeloma remains incurable, ultimately the journey is about accepting that the end of one’s life may be near. In short, we confront the spectre of death.

Here is my story of living with myeloma.

I have always been a healthy, high-energy person. Well into my late 50s, I worked hard and played hard. I thought nothing of spending ten hours at the office, then, before going home, heading to the racquet club to play squash or go for an hour run in the park.

When I was diagnosed with myeloma, in October 2009, at 61, my initial thought was: I must be the healthiest person alive with cancer. Then came the realisation that I had just been handed a death sentence.

Perhaps unsurprisingly, the first question I asked the haematologist was: “How long do I have left to live?” She replied somewhat firmly: “Wrong question. A lot of progress is being made in the treatment of myeloma. With any luck, you will benefit”.

She was giving me a message of hope: Don’t despair. Don’t give up. And she was right. Over the past 15 years progress has been tremendous, and I have benefited hugely.

After learning about my cancer, I decided on my roadmap: First, I resolved to make my story one of living with cancer rather than dying from cancer. Second, myeloma was not going to change who I am, how I live, or what I do. I was determined to carry on living fully as always, accepting the changed circumstances while rising to the challenge of cancer and its treatment.

Determination would be my guiding light. My mantra: Never give up. Just live.

So, I began my myeloma journey inspired by these lines from the American poet, Mary Oliver:

Tell me, what is it you plan to do

With your one wild and precious life?

In late February 2010, four months after my diagnosis, I was putting the finishing touches on a hiking trip in the Sacred Forests of Japan when I received a call from my haematologist. She informed me that I needed an urgent stem cell transplant. The myeloma was out of control. Immediate treatment was absolutely necessary.

With a sigh of disappointment, I cancelled my Japanese trip and began my myeloma journey instead.Three years later, at the end of June 2013, aged 65, I retired from a career in higher education. My myeloma was still under control after the successful stem cell transplant in 2010. My end-of-career plan was to embark on a biking adventure somewhere in South-east Asia.

I have been an avid cyclist since my youth. With retirement, I finally had time on my hands. I decided to take eight weeks and cycle down the Mekong River through Thailand, Laos and Cambodia. A band of similarly aged friends were keen to share the adventure. In January and February 2014, we made it happen, riding 2500 km on touring bikes along the banks of the mighty Mekong River, taking small boats when the roads ran out.

The Mekong trip was the first of many long-distance cycling trips around Southeast Asia and across Europe after my myeloma journey began. In mid-2014 my myeloma progressed again, so I began a new treatment with the immunomodulatory drug, Revlimid. That did not stop me from cycling that summer from Basel (Switzerland) to Budapest (Hungary) – 1500 km – with my supply of drugs in tow.

In the winter of 2015, still on Revlimid, I cycled 2500 km in Indonesia: across East Java, around Bali and Lombok, then Flores. A doctor friend from the Mekong trip cycled the mountainous island of Flores with me. I had lost none of my determination to enjoy life, explore new places, meet new people, and just live. My myeloma remained in check.

Throughout 2016 I felt pretty good although I had become refractory to Revlimid. In the winter, with the same doctor friend, we cycled across Sumatra, an island of high mountains, active volcanoes, and teeming jungles. And in the summer, with still another doctor friend, I cycled from the Italian border in France to the Atlantic Coast. The takeaway here: Doctors enjoy adventures too.

By the autumn of 2016, my myeloma needed treatment again. So, in January 2017 I began a clinical trial to explore the impact of a multi-drug strategy on myeloma, a triplet drug combination: a proteasome inhibitor (carfilzomib), an anti-CD38 monoclonal anti-body (daratumamab), and a corticosteroid (dexamethasone).

Two months before the start of the trial, knowing that I would be side-lined for the winter of 2017 and probably beyond, I cycled from Singapore up the Malay Peninsula to Phuket in Thailand (1500 km,) a confirmation that I still had plenty of life in me. The clinical trial went well and in the summer of 2018, I was able to get away for a short cycling break while still on treatment. But when I returned from 2 weeks of cycling the Saint James pilgrimage path in France, the study doctor withdrew me from the clinical trial: the myeloma had progressed alarmingly. So, I underwent an immediate second stem cell transplant.

That procedure, my fourth line of treatment, went well and I began maintenance therapy with pomalidamid, another immunomodulatory drug. It worked for the next three years, until December 2021, which was a nice long period of response.

COVID-19 arrived in early 2020, so my wings were clipped once again, at least on a bike. Just before the lockdown, in late February 2020, my wife and I managed a 50^th wedding anniversary trip to South-east Asia, spending a few weeks in Laos, Singapore and Bali.

In November 2021 I caught a nasty cold after a vigorous workout in a poorly heated yoga studio. By early December I had developed acute pneumonia and required hospitalization in the Intensive Care Unit (ICU) of the hospital in Paris where I am treated for myeloma. Somewhere along the line, I also contracted sepsis. Neither of these is good news for a myeloma patient.

During the clinical trial of 2017-2018, I had read about CAR-T cell therapy and told the haematologist that I was keen to undergo the therapy if and when it became necessary. The comment did not fall on deaf ears.

In early January 2022 she asked if I was still keen on a CAR-T. The therapy was achieving amazing responses in clinical trials and increasingly seen as the Holy Grail by myeloma patients. I accepted the offer on the spot.

The CAR-T was my fifth line of myeloma treatment. At that time, in France, only 10 patients per month were being offered access to a CAR-T. That is a woefully low number for a country with over 5,400 new cases each year and a 30,000-strong patient community.

I was fortunate to be among the lucky few. Since then, the situation has brightened considerably. Today, in France, well over 500 patients have been treated with the one commercial CAR-T available. The number is rising steadily. The collection of my lymphocytes took place in mid-March 2022 followed by their re-engineering and expansion in the US-based manufacturing facility.  In mid-May I was hospitalised for the reinfusion of the BCMA targeting T-cells.

The week after the reinfusion was a rough time with various side effects and numerous blood transfusions for anaemia, thrombocytopenia and neutropenia, both during and after the procedure. To complicate matters, in late June I began struggling with severe gastro-intestinal issues. At first, the medical team was not alarmed, but in early July, I had difficulty keeping food down. After two weeks of this, I was quite weak and finally hospitalised.

As you probably know, CAR-T treated patients are particularly vulnerable to infections. I had caught the COVID-19 virus while out and about after my release from the hospital. By late July I was stabilised, but not before losing more weight. During the CAR-T hospitalisation in May I had lost 8 kg, but now with COVID-19 in July I lost another seven. In just three months I had lost 15 kg (over 30 lbs) for my 1m82 (six feet) frame. Physical exercise of any kind was out of reach. Even a stroll around the block was an ordeal.

For years I have exercised two hours a day, so you can imagine my state of mind. In the summer of 2022, for the first time since 2010, I began to wonder if I wasn’t approaching the end of my life. I am an optimist by nature, so when I began having such dark thoughts, I knew it was time to get a grip on things and work at regaining my mental stamina and physical strength.

Gradually I recovered enough energy to return to the yoga studio, to play a bit of tennis, and even to get back on my bike to move around Paris. A source of pride has always been to cycle to my hospital appointments, a 20 km (12 mi) roundtrip. I have done this since 2009 and still do so today, 15 years later.

In late 2022, my wife and I rekindled our love for travel with two weeks around Italy, followed by a week in Rome. In early 2023, we revisited our favorite spots in Laos, including a six-day cruise on the Mekong River. By mid-2023, we enjoyed a week in Venice and a two-week trip through Central Europe with our granddaughters.

My quality of life and well-being would not be what they are without the support of my family and many friends who have always encouraged me to keep going and live. Today, two years into my CAR-T journey, I am still in complete response. The only significant health challenge I face is the risk of infection. In the past two years I have been hospitalised twice for viral infections. This is common for myeloma patients treated with the new BCMA-targeting immunotherapies.

I continue to have travel projects, of course. They enable me to project into the future, to frame a long-term, hope-filled horizon. This coming September I will complete a project I began in the summer of 2021: Cycle the English pilgrimage path from Canterbury to Rome. Back then I completed the first 1000 km to Lausanne. This year I will ride the last 1000 km over the Alps, through Tuscany and Umbria, and on to Rome. As I am now a bit older, and a bit less strong, I will ride an e-bike for the first time.

To conclude my story, here is something I learned from my frequent travels in Bali. In the 1930s, traditional Balinese painting was in decline, threatened with fossilisation. A group of painters decided to create a movement to revive their art. They called themselves Pita Maha, meaning « great vitality, strong determination. Their movement laid the foundations for the renewal and survival of Balinese painting.

Their mantra inspires me today, strengthening my resolve to live on.

I have added an element of my own: « unwavering resilience.

Great vitality, strong determination, unwavering resilience: these are just three of my responses to living with myeloma.

William Kenneth Casler

Paris France , June 2024