ByJohn Fryer, WA

5 minutes

I was diagnosed with myeloma at the age of 60 in January 2007. After three months of unexplained and untreatable severe back pain, my General Practitioner (GP) had a lightbulb moment and referred me to a haematologist at Sir Charles Gairdner Hospital (SCGH) in Perth. This is where my myeloma diagnosis was confirmed. To be told that I had blood cancer was a shock, but I’m an optimist at heart so I put on a brave face and my trust in haematology.

The aim of my initial treatment was to reduce my paraprotein level in preparation for an autologous stem cell transplant. At first, I was started on an old treatment regime called ‘VAD’ (a combination of Vincristine, Doxorubicin and Dexamethasone). This regime didn’t work very well for me, so I was switched to thalidomide, which thankfully did. My stem cells were built up and enough collected and frozen for two transplants. I had my first transplant in August 2007. Shortly into the recovery period I developed an infection and spent a week in hospital. Luckily, I recovered well after that.

My haematologist then told me that recent research indicated that an immediate second transplant could be beneficial, and that I was strong enough to handle that. So, I agreed to another which went well, with no infections and I duly recovered.

Those reading this who have had an autologous stem cell transplant will know that the whole process and recovery period can be a miserable experience, but you get through it. I found that I could feel somehow outside of myself, a spectator looking on rather than a participant, and that helped.

Two things greatly assisted me to recover from both transplants. First, my wife Ginny looked after me wonderfully, for which I am deeply grateful. Second, our labrador Hugo was almost permanently at my side; he followed me from room to room, and even across the same room, always lying on the floor as close to me as he could get. Dog owners will know how comforting that can be. He was my faithful and devoted carer.

Why I agreed to undergo a second transplant straight after the first is still a mystery to me! Nevertheless, my faith in my haematology team was well placed because I then had over ten years of partial remission and was able to live a fairly normal life. I had blood tests and appointments with my haematologist every two or three months, and while the paraproteins increased slowly, the level was not high enough to be of concern. I felt fine and was taking no medicine during those ten years other than a bisphosphonate infusion called zoledronic acid (Zometa) every six months to strengthen my bones.

During that time, I retired. Ginny and I moved from the Perth Hills to Margaret River, about three hundred kilometres south-west. The move had little effect on my care as most of my haematologist appointments were by telehealth. When I did have to travel to Perth, we stayed with either one of my two daughters, whom both lived in Perth, or sometimes at a hotel. The Patient Assisted Travel Scheme (PATS) helped by contributing to some of the travel and accommodation costs. I was also able to have my zoledronic acid infusions at my local GP clinic, which helped to reduce the amount of travel.

All continued well, until late 2018 when ‘Madam Myeloma’ suddenly reminded me she was still around. I developed severe back pain and blood tests showed that my paraprotein level had increased significantly. I could not walk without help. I had developed a curve in my spine and three of my vertebrae were fractured. The myeloma had also rotted away parts of one pelvic (hip) bone. I underwent two sessions of radiation treatment in Bunbury to eliminate the myeloma spots, and a vertebroplasty in Perth which involved filling three of my vertebrae with a medical ‘bone cement’. Never mind, I was still alive!

I started taking lenalidomide which gradually reduced my paraprotein level. The decision to start taking lenalidomide was made due to it coming in a tablet form and being accessible in Margaret River. I worked hard over the next few years; I gradually reduced the pain medicines until I cut them out altogether. I worked on gaining strength so that I could ditch the wheeled walker and just use a walking stick. The lenalidomide continued to work its magic, and three years ago my paraprotein became “undetectable”, where they remain today. I feel very lucky that lenalidomide has worked for me with minimal side effects that others often experience.

My bones remain soft and brittle, and vulnerable to fracturing; I have had two falls in the last four years which a normal person would probably have walked away from, but in my case resulted in serious fractures and a hip and shoulder replacement.

But after nineteen years of myeloma, I’m still here and living an active and satisfying life. I celebrated my eightieth birthday in January and I’m looking forward to more!