During his “compulsory ‘me’ time” at his local café in Byron Bay, Australia in September 2017, David received an email about a new international Phase III clinical trial for Waldenstrom’s macroglobulinemia (WM), comparing two targeted therapies – ibrutinib and zanubrutinib (previously known as BGB-3111).
By the time he finished his flat white coffee, David had found out the trial was available at three Australian sites, including Brisbane.
“I read the criteria for signing up and it looked hopeful, but there was still a bit of a question mark. So, I noted the doctor’s name at the Brisbane hospital and rang while I was still sitting there,” said David.
“She was surprised to hear from me and said ‘wow’, we haven’t even started the trial yet. How did you know about it?”
“She said if I wanted to be a part of the trial to get my hematologist to send in all my information, which I did.”
“I was told I had a reasonable chance,” said David. Just over a month later, he was on the trial.
Step back 11 years, when David, now 61, started having yearly medical check-ups after his 50th birthday. David’s doctor noticed some anomalies in his blood lab results over a three-year period.
David was originally told he had MGUS. But, after seeing a hematologist for the first time, David was diagnosed with WM in 2012.
“I was told I had two-to-six years to live and that I should have strong-dose chemotherapy (RCHOP) starting the next week.”
“The first thing I did, after recovering from the shock of being given that information, was to go online and start researching WM.”
“Lucky I did. I spent a couple of days doing that and discovered neither the prognosis nor the treatment seemed quite right.”
“The international approach was ‘watch and wait,’ rather than jumping straight in (to treatment), and my prognosis seemed better than had been suggested.”
“Luckily, I got a second opinion. That hematologist agreed with me and put me on watch and wait, with monthly blood tests.”
“We kept a close eye on my symptoms and blood.”
“I was asymptomatic (no symptoms showing) in the beginning, but finally started to get fatigue, not have my usual energy and lost strength in my hands,” said David, a commercial photographer who also runs a bed and breakfast with his wife of 25 years, Kate Platt.
“I also had leg and foot cramps at night. I was getting up, up to five times a night, and walking around for ten minutes before going back to bed.”
“At the time, cramps weren’t recognized as a WM symptom, but have since been added to the list.”
David started treatment on chlorambucil in May 2014, which lasted for a few months.
“They weren’t expecting much to happen,” he said, but it did mean he became eligible for rituximab.
“The Australian Government wasn’t paying for rituximab through the Pharmaceutical Benefits Scheme (PBS – a program that provides subsidized prescription drugs to residents of Australia) unless you already had some other treatment,” explained David.
His first course of rituximab “improved everything apart from the cramps.”
“I felt almost normal again for 18 months, then another course of rituximab lasted about a year,” said David, who continued to be proactive in his research on WM and the latest drugs.
“Everyone was getting excited about ibrutinib, hoping and praying clinical trials in Australia would go through quickly, and the government would begin paying for it. It was a slow process.” (Ibrutinib was listed on the Australian PBS on December 1, 2017.)
Before setting up two general cancer support groups, which he facilitates at Byron Bay and Ballina, David regularly travelled to Brisbane to go to the Leukemia Foundation’s WM support groups.
“They were great. Speakers come and you hear about the latest treatments.”
He is also on WM online forums – e.g., Australian WMozzies and IWMF Connect – and that is how he found out about the randomized zanubrutinib clinical trial he joined in November 2017.
“I would have been really happy to go on either the ibrutinib arm or the zanubrutinib arm of the clinical trial, but moving forward I think zanubrutinib may be the more effective therapy,” said David who discovered he was on the zanubrutinib arm.
“It’s the newer of the two drugs – probably slightly better and with fewer side-effects.”
“The effects are pretty amazing. Within a month, my blood readings were rapidly heading towards normal, and now I’m almost in full remission. And, wonderfully for me, my cramps have stopped during the night, which has made a big difference.”
“I’ve got 100% of my normal energy back, and all my blood levels show I’m pretty close to remission.”
The trial involves taking four pills a day – two in the morning and two at night.
“I saw somewhere that ibrutinib was about $187,000 a year cost-wise, when it first came out – that is approximately $128 a tablet! When I think of that, I say ‘thank you’ to the pharmaceutical industry,” said David, who is on the trial at no cost to himself.
“I could be on the trial for two to three years, and I have been told that I can keep taking the drug at no cost after the trial, providing I continue to respond to treatment.”
“I keep an eye on American and European research on these targeted therapies, and get Google to send me results once a week with anything on ibrutinib and zanubrutinib.”
“There’s no cure for WM at this point, and the interesting thing about these targeted therapies is how long they are going to be effective. My understanding is… the jury is still out on that.”
David goes to Brisbane once a month for blood tests, to see the trial doctor and make sure everything’s good.
“They’re keeping a close eye on me and I have a CT scan every three months.”
“One of the things I’ve always demanded is that I get all my blood results emailed to me. So, when I’m talking to my hematologist, I know the important ones for WM. Those are the ones I keep an eye on.”
“I’ve been looking at all those results for six years. Now I don’t feel the need to watch them quite so diligently and just have a look every so often to make sure everything’s right.”
“I feel pretty confident with where I am with my health outcomes, and where the science is going enables me to feel fairly confident about my long-term prognosis.”
“I intend to die of something else,” said David.
|The changes David has made since his diagnosis
“You hear a lot of people with cancer say they’ve gained a lot of insights and are actually happier now than before their diagnosis. I’m definitely in that category.”
“Emotionally, it was a big shock initially but I coped pretty well. I have a positive attitude but it was hard. My wife also was in shock and we both struggled for a while.”
“I was a busy person and realized I should work at lowering my stress levels. I decided I had three jobs – the B&B, photography and me – and I needed to devote equal time to those three things.”
“I made sure I was doing enough exercise and slowed down my mornings, which feels healthy. I don’t rush into the day. I read the paper and make a big effort to have an hour’s break at my local café in Byron Bay. I zip down there and back on the electric bike I bought, and it all feels good.”
“I cut down on alcohol, not that I was a big drinker, and tend not to drink during the week. Luckily, I’m married to a great cook who makes lots of interesting and healthy food, mostly using a lot of fresh ingredients. And I still like to eat ‘soul food’ – chocolate, cakes, that sort of thing.”
“And, there’s my attitude to life. I appreciate the small things in life more than I did before, and I think I’m happier than before I got cancer. It’s a reminder to everyone that it’s good to slow down and to appreciate everything.”
|David’s advice to help people help themselves
“I’ve realized from my own experience and insights, and stories of other people’s experience in the health system, that it is definitely an advantage to be well educated, proactive and assertive, and to have a fair dose of common sense and computer skills.”
“My advice is – take responsibility for finding out everything you possibly can about your disease; keep doing research, and take charge.”
Byron Bay, NSW, Australia