what it feels like: 'i will find ways to make cancer easier for people like myself’
7 minute read
rinat avitzur, centre, credits her husband and her daughters for being her support team. and when she needed a caregiver 24/7, her husband was always there for her.
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life can change on a dime. after some routine blood testing that showed slight abnormalities, rinat avitzur went into the doctor’s office thinking she was healthy and came out with cancer.
the toronto accountant was 55 years old with a demanding career in risk management, three daughters and a devoted husband who also had a busy job as a physician. rinat, like the rest of us, didn’t plan on getting sick. in fact, the timing was grim: it was 2020 and shortly after her life-jarring conversation with a hematologist at toronto general hospital, the world shut down with covid-19.
“i think everybody assumed i had something like iron or b12 deficiency. i already felt a little bit short of breath. i wasn’t myself,” rinat says, adding she was either naive or optimistic, but certainly didn’t expect cancer. she was referred to a hematologist without any urgency, and her appointment was scheduled three weeks after her family doctor recommended that she see a specialist just to be safe.
she was diagnosed with multiple myeloma, often called myeloma, a type of blood cancer that develops from plasma cells in the bone marrow. plasma cells are mission-critical white blood cells that produce antibodies to fight infection. in myeloma, tumours can form inside your bones and create abnormal cells that crowd out healthy blood cells. anemia is a common symptom because you don’t have enough healthy red blood cells to carry oxygen throughout your body.
rinat is a passionate advocate for awareness of myeloma and treatment research so the journey for patients will become a little easier over time. she’s keen to share her story for blood cancer awareness month in september. while nearly 4,000 canadians are diagnosed with myeloma every year, the majority of us don’t know what multiple myeloma is. about 1,750 canadians will die from the disease by the end of 2024, the canadian cancer society reports.
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not only are people tired, weak and experience shortness of breath, they’re at higher risk of infections. myeloma also damages your bones, eating away at them from the inside, which decreases bone density and can lead to falls and fractures.
myeloma diagnosis and treatment
“i was lucky, i was diagnosed early. i hardly had any symptoms except anemia,” rinat explains. “i know people with myeloma that were not diagnosed as early and they walk with a cane or a walker at the age of 50.”
the hematologist at toronto general sent her immediately to the princess margaret cancer centre in toronto for a bone marrow biopsy and care under the oncology team. there wasn’t time for much reflection on what would come next, or room for dread about beating the odds – about 50 per cent of patients survive at least five years. the hardest part was telling her family about her cancer. she had her husband by her side for that conversation.
“i never said a word,” she recalls of her need to stay calm. “my husband was the one who was talking.”
the results of her biopsy even surprised her oncologist. she had “full-blown” multiple myeloma with 95 per cent cancer cells in her bone marrow and was flagged as high risk, which didn’t match her symptoms. many people have significant bone pain in the back, hips, shoulders or ribs, kidney issues, anxiety, irritability and severe anemia.
“i was high risk and told that i will need two stem cell transplants back-to-back,” she says, which is a course of treatment that has become more advanced and successful, putting myeloma patients into long-term remission, according to research by myeloma canada published in the blood cancer journal in 2023. for patients who are considered strong and well enough, an autologous stem cell transplant works by using your own healthy stem cells to replace cells that cancer treatment kills.
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for rinat, the process started with chemotherapy to attack and clear her body of cancer cells. then the transplant and recovery period before a second transplant. all this was followed by ongoing monitoring and maintenance medications that are lifelong. myeloma isn’t curable.
myeloma canada and treatment progress
“the longer you can keep patients alive, the longer the opportunity for a cure exists and the longer the opportunity for new treatments to go through the research process and be made available for patients,” says martine elias, ceo at myeloma canada, who has been a force for patient advocacy since joining the organization in 2016. she has also worked in clinical research in myeloma pharmacology and has seen treatments progress.
“there are a number of new drugs that have been approved that are very innovative in terms of the way they treat the cancer by using the immune system to attack the myeloma cells in an almost star wars-like action,” she says of developments in immunotherapy. back in 2004, she says there was one drug available for myeloma and now there are about 17 approved by health canada, with some waiting on review for funding and market rollout. the average lifespan for patients is between five to eight years, whereas 10 years ago, it was three to five years.
after a three-year remission of her cancer, rinat had a relapse this year and was enrolled in a clinical trial for a new drug. now she’s back in remission again, continuing with the drug trial.
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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.”
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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 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 special access programme for patients in serious need. the change meant pills that could be taken at home where your specialist calls you for monitoring.
“for me, it was devastating because i really needed the 15 to 30 minutes sitting in front of the nurse when they would ask me, ‘how are you doing?’ i didn’t have a support group. i went on webinars at myeloma canada, which were extremely important, and i learned a lot. but i really wanted that communication.”
she credits her husband and her daughters for being her support team. and when she needed a caregiver 24/7, her husband was always there for her. and friends would call and send meals or go for a neighbourhood walk with her if she could manage it.
“this is something you cannot go through alone. i couldn’t be in control, so you get to understand that it’s not just that you cannot go through this alone, it’s also that you are not in control. it teaches you humility.”
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cancer also changed her path and perspective. she didn’t return to her risk management job. instead, she’s become a dedicated advocate for blood cancer patients in support group leadership and patient advisory roles.
“i remember thinking, ‘when i gain strength what i will do is change my purpose and i will find ways to make cancer easier for people like myself.’”
rinat admits she’s gone from being a very private person to letting her daughter share her story and advocacy work on social media. there’s been an outpouring of donations and support for her fundraising walks for princess margaret cancer centre, for example, and other initiatives. she also consults as a patient partner to pharmaceutical companies to bring the needs and wants of patients to the forefront of drug development.
“the research for multiple myeloma is progressing, and we need to get it faster, especially in canada. we need to push for the next clinical trial all the time and that’s what is saving lives,” she adds.
she does all this with the uncertainty of her own cancer as a dark cloud in the background. after a three-year remission of her cancer, she had a relapse this year and was enrolled in a clinical trial for a new drug. now she’s back in remission again, continuing with the drug trial. “the treatment is through iv every two weeks. so now i’m stronger, although the side effects are cumulative and impact my quality of life. some of them are related to pain, others to comfort and waking me up at night.”
her main concern, though, is for others.
“i’m the biggest advocate for early diagnosis of multiple myeloma. if you think something’s off, get checked and get your blood work done.”
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