3.01.2018

Let's Get Clinical, Baby

There’s always an ongoing conversation in the cancer world amongst researchers, physicians, and medical professionals about clinical trials and how to engage more patients and get them to sign on the dotted line.

As it stands, less than 5% of cancer patients are currently enrolled in a clinical trail.

And the big mystery is why more patients don’t sign up for them. There are some very distinct reasons I won't get into here, but I'll at least give you a few from my own observations.

I think part of it has to do with patient self-education. I’ve sat in enough infusion rooms to know that most cancer patients are older, and probably completely reliant on information and recommendations from their oncologist. I'm going to assume this is a product of their generation, and not growing up with the innerwebs at their fingertips. Granted, I technically fit into that category having somehow graduated from college by using books in a library and the card catalog to complete papers. And being (mostly) reliant on your doctor's advise is fine considering that they can spell all those big, scary technical names for cancer drugs and I can't even spell at a 5th grade level.

I am of the computer generation that doesn’t have to rely on Encyclopedia Britannica anymore for the latest and greatest information. I’m also connected to the latest and greatest discussions about clinical trials for my tumor type in a clinical trials group on COLONTOWN.org. I’m the girl that walks into my oncologist’s office with a spreadsheet of trials I found on trialfinder.fightcrc.org enrolling in Minnesota that are for my tumor type, and he’s the kind of oncologist that lights up with excitement that I’m finally ready to consider a trial. 

For the last 2 years, he’s been eager for me to try an immunotherapy combination trial, and has always told me I’m just biding my time until the trials come around. And they have indeed come around. I appreciate having a young, progressive, and brilliant oncologist in times like this.

I think part of it has to do with clinical trials getting a bad wrap. I’ll admit, prior to entering the cancer patient world, I assumed that all clinical trials involved an actual drug vs. a placebo. And when you’re already playing Russian roulette with your life, why risk the placebo. That’s just not the case - at least for cancer. All the patients in a trial get some good ol’ drugs, and the trials can vary from amount of drug, and often drug combinations. But nobody goes without. 

I think part of it is the association of clinical trails being a last ditch effort or a clinical Hail Mary. I’ve watched as many of my peers have indeed waited until they had failed all FDA-approved cancer drugs before moving on the clinical trials. I truly believe that every patient's treatment path is their own choice, and can completely understand this one. Why risk something that hasn’t been clinically proven to the point of getting the FDA stamp of approval, when you can try all the drugs that are currently on the market.

I think part of it is also the fear of the unknown. Why try a drug that may or may not work, when I can try a drug that has at least worked enough for the FDA to let it merge onto High Street. But the truth is, an FDA approval doesn’t mean it’s going to work for any given patient. After all, I've been living on chemo with my "good stable disease" for the last 6+ years, while I've watched my comrades continually fall to the side of the road on the very same drugs. I tend to think that rolling the dice on a clinical trial may be just as risky as starting a new, already approved drug.

Last Friday, I sat down with my oncologist and we began the search for a clinical trial for me. And before you think there’s a panic at the disco or things have gotten dire, rest assured they haven’t. I’m in a better place with my tumors than I was a year ago, and feel like there’s no better time than the present to go on a clinical trial. Here's why:


  • Because of the great results I got from my 13 months on Erbitux, I’ve “bought myself some time” with my now smaller tumors. That was the remark I made to my oncologist when we were doing a side-by-side comparison of my lungs from over a year ago, but he didn’t find it as humorous as I did (and he actually has a good sense of humor).
  • I’m health has a horse. Or a least a horse that happens to have cancer. To qualify for most trials, you need to be relatively healthy from top to bottom. I’ve watched many a friend not qualify because various numbers and organs were not up to par for the trial criteria.
  • I still have 2 FDA approved drugs for colorectal cancer to fall back on.
  • I have faith in the excitement my oncologist has had over the last 2 years over me and an immunotherapy trial. This man knows me, knows how my tumors respond, and believes this is where my HOPE should be.
Currently he’s looking into one trial at the University of Minnesota, and several down the road at Mayo. Meanwhile I’ll miserably bide my time on my old friend Oxaliplatin, and get back to you later to explain what I mean by “tumor type” and “immunotherapy combination trial” in my simple layman’s terms with my 5th grade spelling abilities.




9 comments:

katielookingforward said...

Thank you for sharing your thoughts on trials! I agree that most people are playing it "safe" with FDA approved options until it most likely too late. Thank goodness no one is receiving placebos on trials!

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This comment has been removed by the author.
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