A tale of two myelomas - Myeloma Australia

Written by Robyn Pritchard, QLD

In September 2011, my husband David, a fit and well, practicing cardiologist, was diagnosed with myeloma. We were about to embark on a long South American holiday, and it was during the medical checkups to ensure we were well enough to go that his myeloma was discovered.

What followed for him was six years of treatment-two autologous stem cell transplants, clinical trials and trips to other states in Australia, trying to source available treatments. Sadly, David died in July 2017.

David was very stoic, uncomplaining and we did enjoy a few, carefully curated trips overseas and in Australia so it was not all hospitals and clinics. I loved him dearly. It was the second marriage for both of us, and we knew how lucky we were in finding each other and living our best lives together.

When David was diagnosed, I knew that it would be a hard road ahead. I felt like I needed to be with him all the time and that nothing bad would happen as long as I was next to him. I would then feel guilty and blame myself when something happened and I wasn’t there, like when he had a fall in the hospital. This led to me feeling extremely exhausted and burnt-out. I wish I had taken care of myself more during this time, given myself a break, a chance to rest and accepted help from people who offered. My advice to anyone who is caring for someone with myeloma is to listen to the people around you, who are telling you to take care of yourself too. When people offer a meal, to do a basket of ironing, to walk the dog, whatever it may be, accept it with grace and say thank you. How I wish I’d said ‘yes’ to offers during David’s illness.

Towards the end of David’s life, I had the most annoying rash on my legs. Creams, lotions and diet restrictions didn’t help. My dermatologist (skin doctor) decided to run a full panel of blood tests and lo and behold I was diagnosed with monoclonal gammopathy of undetermined significance (MGUS) a precursor condition to myeloma. I was at the hospital with David when I received my diagnosis, his first words were “Don’t have a transplant”. As it was only MGUS at that stage, a transplant was the furthest thing from my mind. I was worried and fearful for David and put my diagnosis to one side.

After David’s passing I had regular blood tests to monitor my paraproteins and, scarily, they kept increasing. How could this be? “Just bad luck” is the answer I always get, maybe it is. I was terrified that I would follow the same path as David, supporting him through his experience first-hand, I was convinced that the same was going to happen to me.

I did receive some counselling through a psychologist and practiced some mindfulness and meditation. However, what I found most helpful was starting medication for my anxiety. There is still a lot of stigma around seeking support for mental health and taking medication and I don’t understand why. I don’t think I could have gotten through this period without it.

At the end of 2020, I had severe back pain which didn’t improve with pain medication or rest. An MRI scan revealed a lower back fracture and a couple of worrying lesions further up my spine.

After an urgent consultation with my haematologist, it was decided I should undergo an autologous stem cell transplant sooner rather than later. Despite David’s words ringing in my ears. “Don’t have a transplant”. I listened to my haematologist and went along with all he suggested, and I am so glad I did!

It was, by no means, an easy ride but, I gained a ‘full response’ from my autologous stem cell transplant.

It is now four years later, and I continue daily maintenance treatment with lenalidomide also known as Revlimid (with all the side effects that this brings) but I’m still here. My paraprotein is slowly starting to rise so my haematologist is watching closely to see if the rise ‘walks, canters or gallops’ and when I may need to start a new treatment.

David and I had a long list of places we wanted to see, so I continue to travel and do all the things we had planned. I have made many trips overseas since my autologous stem cell transplant, having children and grandchildren who live in far flung places (a daughter in Switzerland and a son in Hong Kong). I take precautions including wearing a mask and washing my hands regularly but always seem to come home with a mild chest infection from the new environments. My next trip will be to Switzerland for a white Christmas with my daughter. It’s been so long since my last white Christmas and I’m looking forward to the Christmas markets.

Aside from my travels I volunteer at Vinnies once a week and regularly video call with my grandchildren. I am also participating in a myeloma bone strengthening study being run by the University of Queensland. The study is called MyeEx, and I have been allocated to the exercise arm where I do sessions with an exercise physiologist twice a week.

So, there you have it, two different tales of myeloma, highlighting what we all get told- no two myelomas are the same. Of course, David’s myeloma was a more aggressive type and was discovered late. Mine was caught early at the MGUS phase, monitored and treated as soon as needed.

Fear can be a driver that’s unfounded, so it’s important to remember that your experience may be completely different to someone else’s. “Just bad luck” still doesn’t explain this horrifying phenomenon, but luck is where you find it. I am lucky that I am still here, still travelling, visiting my children, watching my grandchildren grow, living life to the fullest and wondering.