Pedaling with hope - Myeloma Australia

Written by Peter Aroney, NSW

In 2018, I was a fit, healthy and passionate mountain bike rider, tandem cyclist and

golfer. I would love to go on long 3–4-hour mountain bike rides, and my wife and I have previously travelled to Europe to ride. I had developed a sore back, so I visited my GP who sent me for an x-ray and some blood tests. The blood tests picked up a paraprotein. It was at this point that I was diagnosed with Monoclonal Gammopathy of Undetermined Significance (MGUS) which at the time I had never heard of. The back pain ended up being muscular and unrelated to my MGUS. However, for the next 6 years I had regular blood tests through my haematologist to monitor my paraprotein. Initially the blood tests were every 6 months then every 12 months and eventually I was just monitored by my GP.

During my years with MGUS, I had plenty of time to think about how I would respond if I developed myeloma. I concluded that I wanted to make my family (wife Cathy, 3 daughters, 3 sons-in-law, 6 grandchildren) proud of the way I would cope. To help me achieve this, I turned to and found strength in my Christian faith. There is a man in my church community and another associate of mine who have both been living with myeloma for over 16 years. While I know everyone’s myeloma is unique, this provided me with hope.

By March 2024 my paraprotein had risen… time to see a haematologist again! It was confirmed that my MGUS had progressed to myeloma. As each of my daughters and their families arrived on a holiday we planned over the Easter break, we told them the news. I believe because I had those years living with MGUS to process the possibility of myeloma, I wasn’t worried or stressed. Remaining calm, I think it helped the rest of my family remain calm too.

Following a bone marrow biopsy, I was accepted into a clinical trial called Riddle-M-X. My myeloma was classified as ‘high-risk’, so my treatment included the standard therapy of dexamethasone, bortezomib and lenalidomide plus the addition of selinexor. After induction therapy I went on to have an autologous stem cell transplant. I coped quite well during the transplant aside from having a racing mind, not being able to sit still and not being able to sleep well for 2 days after high-dose chemotherapy. I am now on maintenance treatment with lenalidomide and selinexor. The day after I take selinexor I feel quite fatigued and nauseous and this lasts about 2 days before I feel 100% again. Otherwise, I find the treatment quite tolerable.

As part of the clinical trial, I continue to have a blood test every 4 weeks, and a bone marrow biopsy every 6 months which includes a newer test called Minimal Residual Disease (MRD). I was initially in a ‘deep and full remission’ but in my most recent MRD results there is some low level of disease present. At this stage my haematologist assures me I am still in a good remission and will continue to monitor. I will remain on my current maintenance treatment at this stage.

Although my results from treatment have been good, unfortunately myeloma bone disease has done a lot of damage to my spine. Skeletal surveys revealed 5 compression fractured vertebrae. It is difficult for me to stand up straight, and I experience pain when walking. I have lost about 5cm in height. My damaged spine has been my biggest issue. Initially, I was unable to do the activities I loved most- bike riding and playing golf. This was a really tough time for me, thinking I may never be able to enjoy these activities again. During this time, I reached out to the Specialist Myeloma Nurses on the telephone support line. The nurse I spoke to was very helpful in explaining the different treatments that may be used in improving my spine and bones, such as exercise and surgery.

After some research I decided to see an exercise physiologist to see if I could trigger some bone repair. The exercise physiologist prescribed a range of exercises and stretches; I attempted to take long walks (ie. Weight bearing exercise to encourage bone health), used an indoor cycling trainer to rebuild muscle and slowly regain my fitness and I tried to continue all my usual home maintenance tasks, such as mowing and gardening.

Earlier this year, I had another skeletal survey that revealed, due to my good remission, my osteoblasts (cells that build and repair bone) were obviously back in action, and my vertebrae fractures had healed (although still wedge shaped). Consequently, I was able to recommence mountain biking, tandem cycling and golfing. My golf handicap has suffered a few shots, but it is such a joy to be able to do these sports again. I was so excited when I managed to walk the whole golf course! I continue to see an exercise physiologist and am looking forward to working with them to further improve and strengthen my back. My long-term goal is to be able to travel and do some cycling overseas again.

Living with myeloma is so much more than just the treatment and results. The mental, emotional and spiritual aspects of dealing with a cancer like myeloma are major factors that every person diagnosed, and their loved ones, need to process. My advice is, don’t try to do it alone. Reach out for support from those around you. My wife Cathy has been my biggest support. Having someone with you at your appointments to take in information is so helpful.

Throughout my diagnosis, I have managed to remain very peaceful and have not been worried about my situation. In my case, I have leaned heavily upon my Christian faith. I do not know what lies ahead of me, but I plan to do what I can to remain peaceful.