Written by Jean-Pierre Gorce, WA
I was diagnosed with myeloma in March 2024, and it turned my life upside down. It all started with severe pain in my ribs, and a scan revealed pathological fractures in both my ribs and my spine. A bone marrow biopsy confirmed the diagnosis.
My haematologist invited me to participate in a clinical trial called Riddle-M-X. The trial was for newly diagnosed patients who were fit enough to receive an autologous stem cell transplant. The trial was comparing the standard first-line treatment of lenalidomide, dexamethasone and bortezomib (VRD) with VRD plus the addition of Selinexor depending on whether the patient had standard-risk myeloma or high-risk myeloma. I was classified as having standard-risk and so I immediately began the standard first-line treatment of lenalidomide dexamethasone and bortezomib, along with preventative medications like antivirals, aspirin, and vitamin D.
In August 2024, I underwent an autologous stem cell transplant. It was challenging. It took three days to collect the target amount of stem cells, a long time to sit in a chair with both your arms connected to a machine. Then I couldn’t believe how fast it was to reinfuse the stem cells after chemotherapy! A few days after the transplant I started to experience side effects- fatigue, nausea, loss of appetite and diarrhea. Although this wasn’t pleasant, the nurses at the hospital were able to give me medications that helped ease these side effects. My advice to anyone who is going to have a transplant is don’t hesitate to tell the nurses about the side effects you’re experiencing and ask if there is anything that will help.
Something that I found really beneficial leading up to my stem cell transplant was participating in a ‘prehab’ program at the hospital. I saw a physiotherapist and did exercises in a gym, a dietician who gave me advice on nutrition leading into transplant and during, and also a psychologist who helped me adapt mentally and emotionally to my diagnosis. This really helped to prepare my mind and body going into transplant.
After the transplant, I spent the next few months recovering and began to feel a bit more like myself.
In December 2024, I started maintenance chemotherapy as per the clinical trial protocol with lenalidomide and Selinexor. This really knocked me around — I lost my appetite and felt extremely fatigued (tired). I couldn’t ride my bike or maintain the fitness routine that had once been so important to me.
One of the low points was cancelling a long-anticipated European holiday with friends in May 2024. To soften the blow, Kate and I planned a trip to Singapore in May 2025 to look forward to something relaxing and finally celebrate our 35th wedding anniversary. However, the day before our departure, I wasn’t feeling great and got disappointing blood results: I was anaemic (low red blood cells) and neutropenic (low neutrophils- a type of white blood cell). The next morning, I waited anxiously for a call from the doctor to confirm whether I could take a week off chemotherapy — and thankfully, the answer was yes. After a filgrastim injection (an injection that helps to boost neutrophils), we headed to the airport, masked up, and boarded the plane.
It was nerve-wracking being around people coughing nearby, but there was no way we were missing that flight! We had a fantastic week — it did us the world of good to escape hospital appointments and health worries. We soaked up the sights, immersed ourselves in the culture, and enjoyed the incredible food.
The last time we were in Singapore was 15 years ago with our daughter. It was amazing to see how much it had changed. We had an idea of some of the sights we wanted to see but very much let our feet guide us and took our time to explore.
Some of the highlights were the busy open air food halls with food stalls cooking fresh food in front of us, a cruise along the river at night to see the downtown lights, garden by the bay, the large Japanese book store called Kinokuniya where we spent a whole morning exploring books of all types in multiple languages and of course the incredible dinner we enjoyed to finally celebrate our 35th wedding anniversary.
We highly recommend Singapore: it’s safe, clean, has efficient public transport and is a country close enough to home in case of an emergency. We also took care to mask up in confined spaces, sit outside when possible, and sanitize surfaces — precautions that served us well. We’re now all booked for our next holiday to France!
I can honestly say that having something to look forward to — whether a trip, a project, or a small goal — is one of the best ways to make living with myeloma more bearable and life-affirming.
