Internet & medicine

Self-medicating patients guide each other on web

EDMONTON – Self-medicating cancer patients are communicating via the internet and an online discussion board to share information about what happens when they take an unapproved drug that shrank tumours in lab rats.

But experts, including a cardiologist who has studied the drug’s effects in humans, warn that such an online database can lead to serious problems.

According to the Edmonton Journal newspaper, interest in the drug, known as dichloroacetate (DCA), has jumped since January. That’s when the academic journal Cancer Cell published the research of a University of Alberta doctor, who found that the compound – used only in lab animals – shrinks tumours without damaging healthy cells.

Neither Health Canada nor the U.S. Food and Drug Administration has approved the drug, which has existed for decades. It is currently being tested on humans in clinical trials.

That has not stopped terminally ill cancer patients and their families from buying the inexpensive, water-soluble powder from chemical suppliers.

Many are giving each other advice about using DCA over the Internet, including on a discussion board at www.thedcasite.com, where recent discussions turned toward setting up a patient database.

One writer, who says he is a 46-year-old cancer patient working in the medical field, suggested all DCA users participating in the online database should fill out a medical-intake form consistent with those used in standardized studies. Patients should then regularly submit follow-up information noting adverse effects, blood-test results, dosage information and more, he said.

“The data would be compiled in a flow sheet available for all members to read... I will gladly donate whatever time it takes to get the medical intake forms developed,” he wrote. “If done analytically with no predetermined agenda, I think this board could become a powerful research tool.”

But Laura Shanner, associate professor of health ethics at the U of A’s John Dossetor Health Ethics Centre, questioned the value of such a database. Readers won’t have the expertise to decipher meaningful trends and patients taking DCA won’t be properly monitored by physicians, Shanner said.

“If it starts going badly, who is following you before it gets out of control? By the time you realize your liver is failing, you’re in big trouble,” Shanner told the Journal.

“We all hope this drug will be the breakthrough. I sure understand the desire of someone who is seriously ill or whose loved one is seriously ill (to find a treatment), but there is the risk that you could poison someone on top of their having cancer.”

DCA has been known to cause peripheral neuropathy in humans – reversible damage to peripheral nerves that causes imbalance and finger numbness – as well as low sperm counts in animal tests.

Many cancer patients would likely be ingesting chemical-grade rather than pharmaceutical-grade DCA, warned cardiologist Dr. Ruth Collins-Nakai, past president of the Canadian Medical Association and chief medical officer with CardioMetabolics Inc., a U of A spin-off company running a DCA study on geriatric heart-surgery patients.

“They might be taking contaminated something-or-other, and the contamination may be the thing that’s causing the side-effects,” Collins-Nakai said. “You have to meet stability, purity and temperature standards (to manufacture pharmaceutical-grade drugs.) You have to meet concentration standards, efficacy standards.

“There’s a whole series of things you have to do to make sure it’s safe to be put into the human body.”

Edmonton-based CardioMetabolics is aiming to get Health Canada approval to use the drug on heart patients.

Company president Kimmo Lucas said he thinks his firm might be able to help get DCA on the market for cancer patients more quickly. CardioMetabolics is well-positioned to bring the drug to market, Lucas said.

Meanwhile, the Canadian Cancer Society is urging people with cancer not to use DCA, and issued a statement on unauthorized use of the chemical.

The society’s director of cancer control policy said while she sympathizes with people who are looking for ways to prolong their lives, taking an untested drug, which can cause significant side-effects or trigger serious drug interactions, isn’t the answer.

“It must be extraordinarily difficult dealing with that kind of stage of disease and some of the decisions they have to make,” said Heather Logan, a former nurse who worked with cancer patients.

“Having said that, we just don’t know whether the use of this substance will actually hasten someone’s death... We don’t know whether the use of this drug will cause severe side-effects that will reduce significantly somebody’s quality of life for the time that they have left.”

Logan said DCA can cause peripheral neuropathy, in which the nerves in the arms and legs are damaged. People taking DCA run the risk of being unable to walk or speak, she said.

Many approved cancer therapies and other drugs can cause side-effects, and patients and their doctors must weigh those risks versus known benefits to decide whether to proceed. But in the case of DCA there is no evidence to date that it will have any cancer-fighting benefits in people.

And drugs that seems promising in animals are often ineffective when used on humans, experts say.