One of the biggest challenges is that myeloma often gets missed. It’s usually a cancer in the elderly, where bone pain and susceptibility to infection can be chalked up to the fragility that often comes with aging. And there’s no screening for myeloma like there is for breast cancer and prostate cancer. What drew Martine to the specialty was the vulnerability of seniors at risk.
“They needed a voice to help them advocate for what good healthcare, what good information would look like,” she says.
Despite the advances in the field, myeloma pain can be difficult to manage and side effects of drugs can be harsh, ranging from diarrhea to skin rashes, confusion and memory troubles. Most patients also have to take steroids. “The type of steroids and the dose that they take, I equate it to drinking like five to 10 Red Bulls, which can make people hyper and disturb their partner’s life and their family.”
Martine also talks about the mental toll of having a remitting disease that is going to come back after remission, making each six-month blood test and follow-up highly stressful.
“You’re always worried that the cancer is coming back or has come back.”
Family support and advocacy
Rinat, however, didn’t let herself go down the rabbit hole of doubt that she wouldn’t come out the other side of treatment. “I didn’t feel sorry for myself. It was like, if that’s what needs to happen and I need to go through this, then I will go through it.”
The pandemic restrictions, however, made the procedures feel even more isolating. Patients had to keep six feet apart, and you couldn’t talk to anyone or have family or friends at the hospital with you for support. Because of COVID, she was transferred from a weekly injection given at the hospital to a new medication her oncologist got for her through Canada’s
for patients in serious need. The change meant pills that could be taken at home where your specialist calls you for monitoring.