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This commonly prescribed cancer drug was supposed to help save his life. Instead, it killed him

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When Dr. Anil Kapoor was diagnosed with stage four colon cancer in January his prognosis was positive, and his family was hopeful treatment would buy him several more years.

But weeks later, the 58-year-old Burlington, Ont., resident was dead — killed not by the cancer, say doctors, but by the commonly prescribed cancer drug Fluorouracil (5-FU) that was supposed to help save his life.

“It was honestly a cruel rollercoaster of emotions,” Anil’s son, Akshay Kapoor, told Go Public. “I just feel like we were robbed of time together.”

5-FU, used since the 1970s to treat many cancers including colorectal, stomach, breast and cervical cancer, can be toxic to certain patients.

  • Got a story you want investigated? Contact Rosa and the team at gopublic@cbc.ca

Some provinces now pre-screen for genetic variants — differences in people’s DNA — that can lead to serious illness and even death.

But those tests may be giving some cancer patients and their families a false sense of security; failing to flag some of the people who could get sick or die from 5-FU, say experts.

Anil was pre-screened and got the all clear to receive the drug. Just a few days after his first and only dose, he went from being well enough to work to being bedridden.

He was killed by a cancer drug that was supposed to extend his life | Go Public

 

Featured VideoDr. Anil Kapoor died after taking one dose of fluorouracil, a commonly prescribed chemotherapy drug. Experts say his death could have been prevented.

“He started vomiting and feeling extremely nauseated. And then within 24 hours, he had inflammation in the mouth and throat. He could not eat or drink anything and he was also having profound diarrhea,” brother Scott Kapoor told Go Public.

Three weeks later, on Feb. 28, Anil died. More testing later revealed he had a genetic variant that wasn’t included in the pre-screening.

Anil’s family says they were stunned to learn that current pre-screening guidelines are based on studies that largely leave out populations that aren’t white, a known problem based on medical studies they found from North America and other parts of the world.

“We’re shocked that this is allowed to happen in Canada,” said Scott.

Patients dying from treatment, researcher says

Anil was a doctor — a urologist and head of transplants at St. Joseph’s Healthcare, a hospital in Hamilton. His younger brothers are also doctors. Scott is an emergency room physician and the other surviving brother, Dr. Sunil Kapoor, is an anesthesiologist.

Even with all their medical knowledge, Scott says they’d never heard about the risks of 5-FU because cancer treatment is very specialized.

So, since Anil’s death, his brothers have been scouring medical journals and speaking with researchers across Canada and around the world to find out why the medical system isn’t doing more to inform and protect patients.

Of the provinces that pre-screen for potential toxic reactions, many check for what are considered the four most common genetic variants.

While many cancer drugs can be toxic, what sets 5-FU apart is that severe illness and death is largely preventable, according to Mayo Clinic researcher Steven Offer who has been studying the genetic factors that increase the risk of a toxic reaction to 5-FU for 14 years.

A man with blue eyes and short dark brown hair, wearing a dark grey blazer, smiles at the camera. He wears a royal blue button-up short with a diagonally striped tie.
Mayo Clinic cancer researcher Steven Offer has been studying genetic factors that can increase the risk of a toxic reaction to chemotherapy drug 5-FU. (Mayo Clinic)

“One thing that strikes home is these patients are dying because of their treatment … and not necessarily dying because the cancer has progressed,” Offer said from his office in Rochester, Minn.

Offer says ideally, medical systems should pre-screen for all of the at least 50 genetic variants that can lead to the deadly reaction.

It’s called full genome sequencing. That’s not happening in Canada, according to Go Public’s research. Offer says that may be due to the added cost and infrastructure.

Go Public reached out to Health Canada to ask about pre-screening and what it’s doing about the risks some patients face with 5-FU, but did not hear back in time for publication.

Studies favour white populations: expert

The problem, Offer says, is that the studies used to identify the four most common variants in pre-screening mostly involve patients who are white, leaving other populations more vulnerable.

Two men, both wearing glasses, smile at the camera with a basketball court, a crowd, and two players in the background.
Akshay Kapoor and his dad, Anil, at a Raptors game in Toronto before Anil’s cancer diagnosis. (Submitted by Scott Kapoor)

Offer warns pre-screening for the four genetic variants could be leading to false negatives, like the one Anil got, for a large number of cancer patients.

The family had full genome sequencing done on Anil after his death and specialists confirmed he carried a genetic variant that likely caused a deadly reaction to 5-FU.

That variant isn’t part of the pre-screening process and is considered rare based on current medical studies.

“When we start looking at individuals with ancestry outside of even northern and western Europe, we know less and less about which of the variants that they may carry will actually predispose them to an increased risk of toxicity to the drug,” Offer said.

It’s an issue flagged in an Ontario Health clinician guidance document published in April: “The lack of robust evidence around variants more prone in racial/ethnic groups has resulted in genetic tests that largely favour a Caucasian population.”

Several liquid medication bottles sit on a stainless steel countertop. They are inside sealed clear plastic bags and have red plastic caps. Their labels say Fluorouracil.
Fluorouracil (5-FU) is a commonly prescribed chemotherapy drug that has proven beneficial to many patients, but for an unknown number of others it can lead to severe illness and, in some cases, death. (BC Cancer)

According to a 2020 Oncology journal article out of the U.S.: “for every 1,000 patients treated with either FU or capecitabine in the United States, 10 patients will die of treatment-related toxicity.”

Capecitabine is the drug’s pill form. Another study that looked at data collected from 14,000 patients throughout North America, Asia and Europe, found 2.3 per cent of patients with certain genetic variants died from 5-FU toxicity, compared to 0.1 per cent of patients without the variants.

Canada-specific numbers are less clear. Health Canada’s adverse reactions website indicates more than 330 deaths involving patients with 5-FU among their prescriptions have been reported since 1975.

There have been 56 fatal adverse reactions reported from capecitabine, since 2011. It’s unclear how many of those deaths were due specifically to 5-FU, a combination of medications or to the existence of genetic variants.

Pre-screening rules

Pre-screening rules differ from province to province.

Earlier this year, Ontario Health started routinely pre-screening. When asked why it doesn’t pre-screen for more than four variants, it told Go Public “there is limited or no information available” on how other variants interact with 5-FU.

It says it will update its pre-screening recommendations when more research is done.

According to Statistics Canada census numbers released earlier this year, 26.5 per cent of the population is “visible minority” — about 9.6 million people.

It’s unknown if the genetic variant involved in Anil’s death is more common in people of South Asian ancestry. It’s one of many unknowns in the research that leaves people of colour with questions about the risks they may face.

“I think the more important thing is that nobody’s informing the patients,” Scott told Go Public.

“So as you and I are sitting here right now, there are people sitting in the hospital being given this drug, who are not of northern and western European ethnicity, and they are completely vulnerable.”

Quebec has been routinely pre-screening 5-FU patients for four genetic variants since 2019. New Brunswick and Nova Scotia have no current province-wide protocol for genetic pre-screening, it’s left up to individual hospitals and oncologists to decide.

B.C. and Yukon pre-screen for six genetic variants after studying 5-FU’s impact on Vancouver’s diverse population.

“As we get more information, we should be prepared to expand our testing or make it most relevant to the populations that we’re serving,” said Dr. Bruce Carleton, who co-authored the study and is the Division Chair and clinical pharmacologist for the University of British Columbia’s department of pediatrics.

He says the goal for B.C. is to make sure testing also recognizes populations that haven’t been “well-served by this research,” referring to B.C.’s large Chinese and South Asian populations.

Some jurisdictions tell Go Public they’re following current medical guidelines, and there isn’t enough information to suggest tests should be expanded. But they say they’ll test for more variants as genetic research develops.

Antidote takes time to get in Canada

There is an antidote to toxic reactions called Uridine triacetate (brand name Vistogard) that can be brought into Canada from the U.S. manufacturer under Health Canada’s Special Access Program, which takes time.

Anil’s family says they were told about the antidote the day before he died — but it was too late.

SERB Pharmaceuticals tells Go Public it’s considering making the antidote available here but hasn’t applied for approval with Health Canada.

Three men smile widely at the camera. The ones on the left and right are wearing glasses while the one in the middle is not. The man on the left wears a patterned button-up shirt, the middle man wears a blue-grey t-shirt, and the man on the right wears a dark grey t-shirt.
Anil Kapoor, right, was a doctor, as are his two younger brothers, Sunil Kapoor, centre, and Scott Kapoor, left. The surviving siblings say cancer treatments are so specialized they were surprised to learn about the risks surrounding 5-FU. (Submitted by Scott Kapoor)

His family also wants better monitoring of cancer patients on 5-FU, so doses can be adjusted or 5-FU treatment stopped altogether if problems arise.

After his brother’s death, Scott had full genome sequencing done and found out 5-FU was toxic to him, too. His brother Sunil, who also got sequencing done, does not have the same genetic variant. In their case, the cost of the sequencing was covered.

Anil’s son, Akshay, says he also plans to get tested. “To find out that … it was preventable. That fills me with a lot of anger and sadness,” he said.

The family says they contacted Go Public to warn cancer patients and their families about what could happen and to encourage the medical community to better disclose risks to certain populations.

“Just like my dad would want, just to save as many people as possible from this happening to them,” said Akshay.

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What’s the greatest holiday gift: lips, hair, skin? Give the gift of great skin this holiday season

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Give the gift of great skin this holiday season

Skinstitut Holiday Gift Kits take the stress out of gifting

Toronto, October 31, 2024 – Beauty gifts are at the top of holiday wish lists this year, and Laser Clinics Canada, a leader in advanced beauty treatments and skincare, is taking the pressure out of seasonal shopping. Today, Laser Clincs Canada announces the arrival of its 2024 Holiday Gift Kits, courtesy of Skinstitut, the exclusive skincare line of Laser Clinics Group.

In time for the busy shopping season, the limited-edition Holiday Gifts Kits are available in Laser Clinics locations in the GTA and Ottawa. Clinics are conveniently located in popular shopping centers, including Hillcrest Mall, Square One, CF Sherway Gardens, Scarborough Town Centre, Rideau Centre, Union Station and CF Markville. These limited-edition Kits are available on a first come, first served basis.

“These kits combine our best-selling products, bundled to address the most relevant skin concerns we’re seeing among our clients,” says Christina Ho, Senior Brand & LAM Manager at Laser Clinics Canada. “With several price points available, the kits offer excellent value and suit a variety of gift-giving needs, from those new to cosmeceuticals to those looking to level up their skincare routine. What’s more, these kits are priced with a savings of up to 33 per cent so gift givers can save during the holiday season.

There are two kits to select from, each designed to address key skin concerns and each with a unique theme — Brightening Basics and Hydration Heroes.

Brightening Basics is a mix of everyday essentials for glowing skin for all skin types. The bundle comes in a sleek pink, reusable case and includes three full-sized products: 200ml gentle cleanser, 50ml Moisture Defence (normal skin) and 30ml1% Hyaluronic Complex Serum. The Brightening Basics kit is available at $129, a saving of 33 per cent.

Hydration Heroes is a mix of hydration essentials and active heroes that cater to a wide variety of clients. A perfect stocking stuffer, this bundle includes four deluxe products: Moisture 15 15 ml Defence for normal skin, 10 ml 1% Hyaluronic Complex Serum, 10 ml Retinol Serum and 50 ml Expert Squalane Cleansing Oil. The kit retails at $59.

In addition to the 2024 Holiday Gifts Kits, gift givers can easily add a Laser Clinic Canada gift card to the mix. Offering flexibility, recipients can choose from a wide range of treatments offered by Laser Clinics Canada, or they can expand their collection of exclusive Skinstitut products.

 

Brightening Basics 2024 Holiday Gift Kit by Skinstitut, available exclusively at Laser Clincs Canada clinics and online at skinstitut.ca.

Hydration Heroes 2024 Holiday Gift Kit by Skinstitut – available exclusively at Laser Clincs Canada clinics and online at skinstitut.ca.

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Here is how to prepare your online accounts for when you die

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LONDON (AP) — Most people have accumulated a pile of data — selfies, emails, videos and more — on their social media and digital accounts over their lifetimes. What happens to it when we die?

It’s wise to draft a will spelling out who inherits your physical assets after you’re gone, but don’t forget to take care of your digital estate too. Friends and family might treasure files and posts you’ve left behind, but they could get lost in digital purgatory after you pass away unless you take some simple steps.

Here’s how you can prepare your digital life for your survivors:

Apple

The iPhone maker lets you nominate a “ legacy contact ” who can access your Apple account’s data after you die. The company says it’s a secure way to give trusted people access to photos, files and messages. To set it up you’ll need an Apple device with a fairly recent operating system — iPhones and iPads need iOS or iPadOS 15.2 and MacBooks needs macOS Monterey 12.1.

For iPhones, go to settings, tap Sign-in & Security and then Legacy Contact. You can name one or more people, and they don’t need an Apple ID or device.

You’ll have to share an access key with your contact. It can be a digital version sent electronically, or you can print a copy or save it as a screenshot or PDF.

Take note that there are some types of files you won’t be able to pass on — including digital rights-protected music, movies and passwords stored in Apple’s password manager. Legacy contacts can only access a deceased user’s account for three years before Apple deletes the account.

Google

Google takes a different approach with its Inactive Account Manager, which allows you to share your data with someone if it notices that you’ve stopped using your account.

When setting it up, you need to decide how long Google should wait — from three to 18 months — before considering your account inactive. Once that time is up, Google can notify up to 10 people.

You can write a message informing them you’ve stopped using the account, and, optionally, include a link to download your data. You can choose what types of data they can access — including emails, photos, calendar entries and YouTube videos.

There’s also an option to automatically delete your account after three months of inactivity, so your contacts will have to download any data before that deadline.

Facebook and Instagram

Some social media platforms can preserve accounts for people who have died so that friends and family can honor their memories.

When users of Facebook or Instagram die, parent company Meta says it can memorialize the account if it gets a “valid request” from a friend or family member. Requests can be submitted through an online form.

The social media company strongly recommends Facebook users add a legacy contact to look after their memorial accounts. Legacy contacts can do things like respond to new friend requests and update pinned posts, but they can’t read private messages or remove or alter previous posts. You can only choose one person, who also has to have a Facebook account.

You can also ask Facebook or Instagram to delete a deceased user’s account if you’re a close family member or an executor. You’ll need to send in documents like a death certificate.

TikTok

The video-sharing platform says that if a user has died, people can submit a request to memorialize the account through the settings menu. Go to the Report a Problem section, then Account and profile, then Manage account, where you can report a deceased user.

Once an account has been memorialized, it will be labeled “Remembering.” No one will be able to log into the account, which prevents anyone from editing the profile or using the account to post new content or send messages.

X

It’s not possible to nominate a legacy contact on Elon Musk’s social media site. But family members or an authorized person can submit a request to deactivate a deceased user’s account.

Passwords

Besides the major online services, you’ll probably have dozens if not hundreds of other digital accounts that your survivors might need to access. You could just write all your login credentials down in a notebook and put it somewhere safe. But making a physical copy presents its own vulnerabilities. What if you lose track of it? What if someone finds it?

Instead, consider a password manager that has an emergency access feature. Password managers are digital vaults that you can use to store all your credentials. Some, like Keeper,Bitwarden and NordPass, allow users to nominate one or more trusted contacts who can access their keys in case of an emergency such as a death.

But there are a few catches: Those contacts also need to use the same password manager and you might have to pay for the service.

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Is there a tech challenge you need help figuring out? Write to us at onetechtip@ap.org with your questions.

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Pediatric group says doctors should regularly screen kids for reading difficulties

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The Canadian Paediatric Society says doctors should regularly screen children for reading difficulties and dyslexia, calling low literacy a “serious public health concern” that can increase the risk of other problems including anxiety, low self-esteem and behavioural issues, with lifelong consequences.

New guidance issued Wednesday says family doctors, nurses, pediatricians and other medical professionals who care for school-aged kids are in a unique position to help struggling readers access educational and specialty supports, noting that identifying problems early couldhelp kids sooner — when it’s more effective — as well as reveal other possible learning or developmental issues.

The 10 recommendations include regular screening for kids aged four to seven, especially if they belong to groups at higher risk of low literacy, including newcomers to Canada, racialized Canadians and Indigenous Peoples. The society says this can be done in a two-to-three-minute office-based assessment.

Other tips encourage doctors to look for conditions often seen among poor readers such as attention-deficit hyperactivity disorder; to advocate for early literacy training for pediatric and family medicine residents; to liaise with schools on behalf of families seeking help; and to push provincial and territorial education ministries to integrate evidence-based phonics instruction into curriculums, starting in kindergarten.

Dr. Scott McLeod, one of the authors and chair of the society’s mental health and developmental disabilities committee, said a key goal is to catch kids who may be falling through the cracks and to better connect families to resources, including quicker targeted help from schools.

“Collaboration in this area is so key because we need to move away from the silos of: everything educational must exist within the educational portfolio,” McLeod said in an interview from Calgary, where he is a developmental pediatrician at Alberta Children’s Hospital.

“Reading, yes, it’s education, but it’s also health because we know that literacy impacts health. So I think that a statement like this opens the window to say: Yes, parents can come to their health-care provider to get advice, get recommendations, hopefully start a collaboration with school teachers.”

McLeod noted that pediatricians already look for signs of low literacy in young children by way of a commonly used tool known as the Rourke Baby Record, which offers a checklist of key topics, such as nutrition and developmental benchmarks, to cover in a well-child appointment.

But he said questions about reading could be “a standing item” in checkups and he hoped the society’s statement to medical professionals who care for children “enhances their confidence in being a strong advocate for the child” while spurring partnerships with others involved in a child’s life such as teachers and psychologists.

The guidance said pediatricians also play a key role in detecting and monitoring conditions that often coexist with difficulty reading such as attention-deficit hyperactivity disorder, but McLeod noted that getting such specific diagnoses typically involves a referral to a specialist, during which time a child continues to struggle.

He also acknowledged that some schools can be slow to act without a specific diagnosis from a specialist, and even then a child may end up on a wait list for school interventions.

“Evidence-based reading instruction shouldn’t have to wait for some of that access to specialized assessments to occur,” he said.

“My hope is that (by) having an existing statement or document written by the Canadian Paediatric Society … we’re able to skip a few steps or have some of the early interventions present,” he said.

McLeod added that obtaining specific assessments from medical specialists is “definitely beneficial and advantageous” to know where a child is at, “but having that sort of clear, thorough assessment shouldn’t be a barrier to intervention starting.”

McLeod said the society was partly spurred to act by 2022’s “Right to Read Inquiry Report” from the Ontario Human Rights Commission, which made 157 recommendations to address inequities related to reading instruction in that province.

He called the new guidelines “a big reminder” to pediatric providers, family doctors, school teachers and psychologists of the importance of literacy.

“Early identification of reading difficulty can truly change the trajectory of a child’s life.”

This report by The Canadian Press was first published Oct. 23, 2024.

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