Derek Caine sits in a reclining chair, rifling through a binder of medical documents for the specific date he started his treatment for leukemia.
The 75-year-old Halifax man started documenting his voyage through the health system in December 2003, when he was told he had chronic lymphocytic leukemia (CLL) and likely had only several years to live.
As a retired businessman, he’s an organized guy.
He’s attentive to details and makes it a priority to be prepared, particularly when it comes to something as important as a cancer diagnosis.
“The big message I would pass along to anybody, it doesn’t matter what disease you got, is you need to be your own advocate,” said Caine during a recent interview in the apartment he shares with his wife June, which overlooks north-end Halifax and the harbour. “You need to walk into that doctor’s office and you need to have questions.”
Caine was diagnosed with CLL after experiencing sudden swelling in the lymph glands in his neck. He underwent an aggressive chemotherapy regimen, which staved off his disease for about a year.
After his relapse, he characteristically took matters into his own hands and visited the Mayo Clinic in Florida for a chromosomal assessment and treatment recommendations. He spent
$6,000 for the assessment and the weeklong stay near the clinic but he said it was definitely worth the money.
The Mayo doctors pointed him toward an intravenous cocktail of drugs called FCR for fludarabine, cyclophosphamide and rituximab.
“Through my advocacy and the advocacy of my doctor, I actually got that treatment in Nova Scotia.
I was the first patient to get it,” Caine recounted.
He credits those six months of IV infusions as the reason he’s survived his disease all these years but he was happy when the treatments ended.
“When you’re sitting there in that chair, there’s a lot of stuff going through your mind,” he said. “The problems and challenges you may have . . . they get blown up out of proportion.”
Those long IV sessions will become a thing of the past, at least for some cancer patients. A new formulation of rituxamab, the drug that takes the longest to infuse, will require only minutes to get a subcutaneous infusion.
“It’s great news in that for a certain number of patients with CLL, instead of anywhere from 2.5 to six hours getting the rituxamab, the drug can be infused over seven to eight minutes,” said Halifax hematologist Dr. Sue Robinson, who helped conduct the Nova Scotia component of the clinical trials, with funding support from the rituxamab manufacturer Roche, for the new formulation.
Not surprisingly, the more rapid formulation is much more concentrated than the IV solution and therefore carries a higher infection risk. For that reason, only younger people with CLL and less aggressive types of non-Hodgkin lymphoma will be able to use the subcutaneous version.
“The older you are and the more illnesses you have, the more complications you would expect with this particular protocol,” said Robinson, who estimated that between 10 and 20 Nova Scotians would be able to use the new formulation. “The average age of (CLL) onset is 72 and this would be for typically younger than that.”
The new treatment was approved by Health Canada for CLL just in late March so at this point it’s not covered by provincial drug programs. The cost per dose will be similar to the IV infusion, about $4,500, and there are usually six cycles of treatment, Robinson said.
As for Caine, he’s made the most of the time that he initially didn’t expect to have. After going through a period of depression with a “sword of Damocles” hanging over his head, he fought the cancer blues with the blues.
“I had a little harmonica,” he said. “I turned that into fundraising.”
Beginning in 2005, he and several other Halifax musicians, including Charlie A’Court, recorded three CDs and performed many live shows as Little Derek and the Haemo Blues Band.
“We raised a couple of hundred grand. And it’s just for patients (personal expenses), not for the hospital,” said Caine, who moved to Toronto with his family from his native England at age 13.
He’s since lived in countries including Australia, New Zealand and the Barbados, where he met June, who’s originally from the Miramichi in New Brunswick. They moved to Halifax in 1999, when he opened a Simmons Mattress Gallery, followed by another in Dartmouth. The stores closed in 2014.
Caine has also devoted time as an advocate of drug coverage by governments for cancer patients. His experience with government and Big Pharma has been a revelation, he said. “It’s a big, big business. It ain’t there to save our lives — well it is — but the reason they’re doing it is because it’s business.”
