Michael’s story was first published on www.iwmf.com on December 3, 2015. This update to the story is a reprint from the Leukaemia Foundation of Australia’s June 2019 issue of Lymphoma News.
Michael van Ewijk “hasn’t looked back” since September 2014 when he started taking three ibrutinib tablets (Imbruvica®) each morning.
When he went on the “ibrutinib only” arm of INNOVATE – a Phase III international clinical trial – he was the first Australian to have this new treatment as a monotherapy, and it’s been lifesaving.
“My life is normal now,” said Michael, 69, of Milton in regional New South Wales (NSW).
“It’s a pill for life. I’m still on the trial and it still works!” said Michael whose immunoglobulin M (IgM) level is sitting just over 30 mg/dl (milligrams per deciliter).
It was 2500 mg/dl when he was diagnosed with Waldenstrom’s macroglobulinemia (WM) in May 2005.
For a couple of years, he had been seeing his internal medicine physician for sporadic “anemia trouble” and this came to a head during a freelance job for the National Parks NSW.
Michael, a commercial photographer and keen bushwalker, had headed off on a “hard bushwalk” which he’d done several times before, with a big pack and cameras.
A short way in, he was struck with incredible fatigue.
“I collapsed, sat, and waited 20 minutes before I could get up and walk a bit further,” said Michael, and the same thing happened again and again.
“Stupidly, I kept going and finished the walk.”
Afterwards, Michael saw his internal medicine physician and blood tests resulted in a “very strange reading.” More bloods tests initially indicated multiple myeloma, then WM. He’d never heard of either condition.
“When my physician, a long-term friend, told me, I grinned and said, ‘oh yeah, what’s that?’
“His face was pretty grim when he explained ‘that’s why I don’t like having friends as patients… you’ve got cancer.’
“Then the penny dropped. I got a bit shocked and of course I went online and scared the hell out of myself.”
Michael saw a hematologist/oncologist, a bone marrow biopsy confirmed he had WM, and over the next six years while on “watch and wait” his life carried on as normal but with “periods of fatigue.”
He had a “healthy lifestyle,” his diet was “good,” he wasn’t overweight, and he was “reasonably fit.” He continued cycling most days, as he had done for the previous 25 years, and made a couple of trips back to the Netherlands, his country of birth.
While his health was stable, Michael also continued to travel each year to Ethiopia in his voluntary role with a not-for-profit organization, Eyes For Africa (EFA), that provided cataract operations to the poor living in remote parts of the African country.
“Gradually things deteriorated and at the end of 2011 my hematologist/oncologist said let’s do some chemo,” said Michael.
He tried to ride his bike during his six rounds of CDR – cyclophosphamide, dexamethasone and rituximab – which he completed in February 2012. And the following month, he went on a “mammoth” three-day ride in Australia with his son, covering 580km (360.4 miles) from Brisbane to the Darling Downs and back.
But later that year, Michael’s IgM level started rising again and he ran the risk of stroke or heart failure due to a thickening of his blood. When his hematologist/oncologist suggested a course of fludarabine plus rituximab, he hesitated.
“It’s a very strong, toxic chemo that can damage the bone marrow,” said Michael, who sought a second opinion before going ahead with the treatment in September 2013.
“I had one treatment and three weeks later, half an hour into the next round, I went into anaphylactic shock.”
Needless to say, Michael didn’t keep going with this protocol. He had developed immune thrombocytopenia [an immune disorder causing an abnormally low platelet count].
After waking one night with blood covering his pillow, Michael was admitted to hospital. His platelet count was zero and it took three weeks and a massive dose of steroids to get his platelets back to a safe level. He described this incident as “the worst experience I’d ever had.”
“But the one round of fludarabine did knock the IgM down and I got some breathing space,” he said.
Next, Michael tried bortezomib (Velcade®) but that also dropped his platelet count to a dangerously low level.
“I’d been to several conferences and I decided that I wanted a second opinion. It was fortuitous that I saw the consulting hematologist/oncologist just as the ibrutinib trial was starting.”
Michael wasn’t eligible for the two arms of the trial that included rituximab as he had already had that treatment, so he went on a third arm for the trial drug on its own.
Now, even though the iNNOVATE trial has closed, he still takes those three tablets every morning.
“My only side-effects include mild diarrhea, which I hardly ever get now and it’s not difficult to deal with. I bleed more easily and get bruising under the skin and sometimes my long-distance vision is affected,” he said.
“Life hasn’t changed really. Life’s pretty good,” said Michael about having WM.
“I had a marriage breakdown and have a lovely partner now – Elizabeth. We’ve been together four years and do a lot of travelling.”
“One thing has changed – I’ve basically given up alcohol. I used to have a good cellar of red wine but decided alcohol is maybe not the best thing for me, so I sold off my wine.”
He’s also cut back on sugary foods but can’t give up dark chocolate.
“I’ve realized I’m lucky because I’ve got this incurable cancer and it hasn’t really affected my life.
“I can do everything I normally want to do, and I’m sure I’m fitter than most guys 20 years younger than me. I’m not trying to boast, but I ride with blokes younger than me and I can keep up with them.
“Most of the time, I’m not even thinking I’ve got this cancer. In the early days, yes, but not now. I don’t anguish or stress about it at all.
“Ibrutinib has saved my life and my quality of life is just great. I’d be struggling without it.”
Michael van Ewijk
Milton, New South Wales, Australia