I was first diagnosed with Waldenstrom’s macroglobulinemia (WM) in May 2005 at the age of 55. I had been having trouble with anemia for a few years before, so I most probably already had the disease for two or three years. At diagnosis my IgM was 25g/l, so I went on “watch and wait.” I had been a regular cyclist for many years, and I was reasonably fit.
Although the diagnosis was scary, I was able to continue life as normal, apart from the occasional periods of fatigue due to my fluctuating hemoglobin count. I managed a couple of trips to the Netherlands, my country of birth, over the next few years.
In 2009 I joined a Non-Governmental Organization called Eyes For Africa that went to Ethiopia each year to conduct free cataract eye operations for poor rural Ethiopians in remote areas. My voluntary role as the manager of the non-medical side of the charity required me to travel to Ethiopia on each of the campaigns. This was not a problem while the WM was reasonably stable. However, by 2011 my IgM had crept up to 45g/l, and the symptoms of fatigue, hyperviscosity, night sweats, low platelet count, etc., made it too difficult and risky to travel. It was also impacting on my work as a commercial photographer.
As the symptoms and fatigue became too great I started my first treatment of chemotherapy – Cyclophosphamide, Dexamethasone and Rituximab (CDR) – in late 2011. I tried to keep cycling during the treatment. My response to the therapy was very good – four weeks after the final chemo cycle I was able to join my son on a three-day 580 km bike ride to raise funds for cancer research. I also was able to go back to Ethiopia with the charity in late 2012.
Unfortunately my remission lasted only a little over fourteen months, and my IgM climbed back up from 19g/l to 55g/l. A repeat of CDR was not an option. At the time there was little choice for WM in Australia beyond Fludarabine and Velcade. Bendamustine was not approved by the Government, and was difficult to import. Hence I started Fludarabine and Rituximab in September 2013. Fludarabine turned out to be too toxic and I had to stop after two rounds because I developed immune thrombocytopenia. At one stage I was admitted to hospital with a platelet count of zero. It took six difficult months of steroids to get the cytopenia under control.
As my WM was still progressing and my IgM rising along with other symptoms, Velcade was tried in April 2014. This was stopped after only one round as it too dropped my platelet count to a dangerously low level. During this period I still tried to keep cycling, although at times I could hardly swing my leg over the bike saddle.
In mid-2014 I changed hematologists and ended up at Concord Hospital in Sydney under the care of Prof. Judith Trotman. There I was lucky enough to be signed up for the Ibrutinib trial that was just starting. I became the first patient on the trial in Australia. The results have been truly amazing. My IgM eventually dropped to 5g/l and my hemoglobin count is normal. I’ve resumed my work with Eyes For Africa in Ethiopia and am cycling as much as 200 kms per week.
This drug has given me the hope that I can lead a normal life, enjoy my first grandchild and keep doing the things I love.
Michael van Ewijk