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machado: joining a clinical trial was the best decision i ever made

13 years ago i signed up for a clinical trial with only one hope: to survive.

by lisa machado

may 23 2022
read time 5 minute read
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shift: a clinical trial could be the best decision you ever make
clinical trials not only bring innovative, life-saving therapies to those who need it the most, they also represent possibility. getty
it was 3 a.m. when a young resident bounced into the examining room holding my medical chart, announcing that he thought i had either lymphoma or leukemia.
as he handed me a referral to a local toronto hospital, although i had no idea he was sending me to a cancer center, i knew one thing: i wanted whatever it was going to take to survive.
meeting with an oncologist for the first time is not for the faint of heart, and though i’m not particularly superstitious, that morning i found myself falling into strange rhythm of weird behaviour as i sought reassurance: a hopeful glimpse at the cross perched high atop the roof of a nearby church (though i’m not religious); tucking my son’s tiny sock into my back pocket for luck; and playing a deafening springsteen’s ‘countin on a miracle’ over and over all the way to the hospital.
the doctor told me my options: start taking the standard (and only) treatment — a relatively new drug that had recently been approved by health canada — or get a second opinion at toronto’s princess margaret cancer centre where i could find out more about some newer treatments that were currently in clinical trials.
i don’t think i took even a second to think about it: wherever gives me the best chance to see my kids grow up is where i want to be. no matter what.

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and so it began. my first experience with a clinical trial — and the best decision i ever made.

a randomized trial means exactly that: it’s random

the trial was randomized between two medications, meaning that the one i got was completely random — the possibilities were the standard treatment or another treatment that showed the same effectiveness but needed more documented information on side effects. either way, a nurse explained, “you can’t lose.”
but we both knew that that wasn’t true. i could most definitely lose, going down in a smoky ball of the-medication-didn’t-work flames, but she reassured me that the close monitoring required by the trial gave me the best chance of catching failure early.
sign me up, then.
it turned out that i got the standard treatment, paid for by the trial — at $5000 every month, that was nothing to sneeze at. and for sure, there were things that were onerous: regular biopsies that required samples of bone to be taken from my hip bone (not even slightly painless), frequent appointments with a trial coordinator to go over side effects (exhausting), logging daily measures of fatigue, pain and emotional distress (stressful), and lots of blood work and other tests to measure things like kidney function and potential effects on my heart. in exchange, i saw my doctor frequently, any issues were taken seriously and investigated quickly and most importantly, i had confidence that if things started to go badly, it would be caught while something could still be done. and as i cradled my one-year-old while a nurse took my blood pressure, this is what i was most thankful for.
powered by
the leukemia & lymphoma society of canada (llsc)

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four years, hundreds of vials of blood and countless chunks of bone marrow later, the trial ended. i continued with the treatment i had been given, and though the tests and appointments slowed, by then i had not only learned so much about the value of clinical trials, but i had also developed some incredible relationships with those who made it their job to help me — and other cancer patients — survive.
i shared this story last week with a friend of a friend whose father is living with myeloma — a blood cancer with no cure. after a stem cell transplant, the cancer came back and his health care team is on the fence about whether or not continuing treatment is in his best interests.
but wait.
if someone will die without treatment anyway, and they are willing, shouldn’t we always try?

this is the question his daughter asked. but what she really meant was, surely there must still be hope .

clinical trials not only give us innovative therapies, but also hope

it’s one of the most beautiful and incredible things about clinical trials: that among all the other benefits they offer, such as bringing innovative, life-saving therapies to those who need it most and keeping research and development churning, they also represent one more avenue — sometimes a final one — of possibility. and when you’re facing cruddy odds, this means everything.

this week we featured a story from clinical trials ontario , an organization that works hard to support and promote ongoing clinical trials (more than 415,000 are ongoing around the world right now), educate patients and the public on the value of clinical trials and make it easier for them to get involved. with insights from people who have faced life-affecting diseases, the story made it easy to see the enormous benefits of clinical trials.

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and you don’t have to be a patient looking for a treatment. many times, people volunteer for clinical trials because a loved one is living with a health condition and they wish to contribute to the development of treatments. other people are simply looking for a way to make a meaningful contribution to science. and sometimes there is money offered to participate —another reason to join a trial.
even simply keeping up on clinical trials can be tremendously valuable: knowing what’s potentially coming down the pipeline in terms of therapies provides some ideas for next-step treatment options to share with your health care team, or that of a loved one. for me, it means always knowing about the new combinations of drugs that are being studied to treat leukemia, and even more exciting, learning more about research showing that some people can stop medication and remain in remission for many years. it’s about hope, but it also helps me to have a plan.
for the friend of a friend, finding out about clinical trials also means that she can know in her heart that she tried everything to help her father. in her words, “i need to know what’s out there so that in the end, i can know i did my best not to leave any stone unturned.”

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and there’s that too — the sense that you did all you could do.
very little in life is certain, and when you are facing a life-threatening health condition, there is even less that you can count on. but as long as there are options, it’s a little easier to get out of bed in the morning — and don’t we all deserve this?
looking for a clinical trial? check out cto’s clinical trial finder 
lisa machado is the executive producer of healthing.
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lisa machado
lisa machado

lisa machado began her journalism career as a financial reporter with investor's digest and then rogers media. after a few years editing and writing for a financial magazine, she tried her hand at custom publishing and then left to launch a canadian women's magazine with a colleague. after being diagnosed with a rare blood cancer, lisa founded the canadian cml network and shifted her focus to healthcare advocacy and education.

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