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