After battling Waldenström’s macroglobulinaemia (WM) since 1996, an international clinical trial for the Australian-discovered therapy, ABT-199, has given Colin Parrish a new lease of life.
“After almost 20 years, I thought I was running out of options. I think I would have been an invalid without access to this new drug. It’s been a complete transformation,” explained Colin, 64, of Darnum in Victoria’s Gippsland.
Thanks to the nine tablets (900mg) he takes every morning after breakfast, his haemoglobin is back to normal and he has the energy again to swing an axe and mow the lawn on his quarter acre block.
“It is a remarkable drug and I feel privileged to be on the trial,” said Colin, one of only four people with WM on the ABT-199 trial*.
“Modern medicine is entering a new phase. It’s constantly evolving and if we become refractory (resistant to treatment), we have new treatment options.”
ABT-199 made Colin’s cancer cells drop massively
Since starting ABT-199 in July last year, the percentage of WM cancer cells in Colin’s bone marrow dropped massively, from 45% to 5%, in six months. He’s optimistic this level will be close to undetectable after his next biopsy (in July) when he will be re-evaluated regarding approval to continue the treatment for another six months.
“I need a close to normal immunoglobulin (IgM) level as well. Before the ABT-199 trial, this level was 52 and In January it was 16.
“I’ve been told that of the 67 patients on the drug as of last November, 23% are in complete remission, including one person with WM.”
Colin was “relatively young” when he was diagnosed with this rare form of non-Hodgkin lymphoma, at the age of 45.
The keen sportsman, who played rugby prior to taking up marathon running when he was 33, completed 14 marathons before deciding to take a break in 1995 following a significantly slower time the year before, which he attributed to his age. Later, when he went to make a blood donation, he found out he was anaemic, before being diagnosed with WM in 1996.
Colin's had many different treatments
Over the years, Colin has had several different treatment protocols and has alternated between periods of remission and relapse.
He began with oral chlorambucil (for 18 months), then oral cyclophosphamide (two years), followed by single agent rituximab (six months) before going onto FCR** (eight years). In 2007, he had a stem cell harvest, and not long afterwards, when the WM cells started building up again, he had a transplant earlier than anticipated – in January 2008.
“It was a rough ride and I lost my hair for the first time, but I got through it and felt pretty good for the next couple of years.”
Then Colin had another setback – he was diagnosed with bladder cancer.
“It was a devastating thing to be told when you’ve already got blood cancer, and there’s a known risk of oral cyclophosphamide inducing bladder cancer.”
His bladder and prostate were removed and true to form, Colin took it in his stride. This is also how he deals daily with bronchiectasis – a chronic condition he describes as a bit like asthma and the result of damage to his lungs from years of chemo.
“If you knock me down, I’ll get up again” is Colin’s mantra and he frequently quotes UK Prime Minister Winston Churchill who once told students to “never give in, never, never, ever ….. give in”.
A second relapse in 2012
“In late-2012 my IgM started building again and I knew I’d relapsed again.”
His condition deteriorated rapidly, so the high school maths teacher took a voluntary redundancy. “I couldn’t even walk from classroom to classroom and it was a struggle to stand and talk. “I enjoyed teaching and until I was diagnosed with WM, I had anticipated being a principal. But when you’re told you’ve got cancer, there really isn’t a choice between 60-hour a week career aspirations or just taking the time to live every day.”
Colin has been with his second wife, Susan, for 10 years. They met through their mutual love of music, formed a musical duo called Takin’ Time, and perform regularly. “I’m happy playing music – I’ve played guitar since I was 14 – and cutting the grass, and looking out the window at green paddocks, and seeing the grandkids regularly. That’s what life is about.”
* The other ABT-199 trial participants have chronic lymphocytic leukaemia (CLL).
** FCR: a combination of fludarabine, cyclophosphamide and rituximab.
From Lymphoma News published in August 2014
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