Monday, May 7, 2012

48 Hours: My Life in a Clinical Trial

(Note: I'm back. I've been away longer than I anticipated for a cycling vacation with the girls and a family wedding in Seattle. But I've been on Twitter and #BCSM Monday evenings. I hope you have been too. Now that Houston's notorious summer weather is returning, I'm back in the writing swing.)


What if? 
      What if, once you turned 50, you could bypass the well-known and dreaded prep for colon cancer screening with something much simpler, and much easier?
      What if that test were as simple as a blood test?
Some of my 'homework.'
      What if the only thing standing between that possibility and reality were healthy volunteers (that would be us, friends) who could spare a a few hours and a few poops to participate in a clinical trial?
       Sigh. Yes. I said poop.
       OK, I said a few poops.
       Let's use our inside, adult voices now. All I want is for you to use whatever word you need to keep reading. For most people shit happens daily. For too many, so does colorectal cancer, the third largest cancer killer in our country. It can be readily detected - and cured - long before invasive cancer has developed.

Here's what happened. I was on deck to have a follow-up colonoscopy this year. My first was ten years ago when I finished breast cancer treatment. Ever since my diagnosis I thought the topic of a clinical trial would be part of treatment at MD Anderson. Even if you're willing, finding the right trial is anything but easy.  Until last week.
         The researchers found me. There was the first surprise. And they waited for me, and not the other way around, while I was meeting with a nurse practitioner to discuss my upcoming colonoscopy. After all, I needed to select my preferred flavor of  GO-Lytely  (honestly, who could you make that word up?) and anesthesia, since something other than "JustKnockMeOut" was required for the orders.
         The trial, as you've already guessed, will test whether or not a proprietary biomarker in blood, urine, and stool samples can accurately predict the presence of adenocarinoma, the most common form of colorectal cancer. This is a ten-center project sponsored by NCI's Early Detection Research Network  that seeks to accrue 6000 patients over the next three years. Let's say that everything works out, awesomely and wonderfully. Even with that, the earliest the news would hit the public eye through papers, conferences and then to the media would be five years.  That's science. And if it doesn't work out, if the hypothesis fails, the only time you'll hear about this is possibly now.

In real life science can be excruciatingly slow. In real life the two researchers (whom I can't identify even though they were terrific) had to think through every possible way the sampling process could go wrong ...in detail you don't want to imagine although we had a great laugh about someone whose sample rolled away. Needless to say, I listened and signed the consent form. Blood was drawn and a urine sample was produced.
         Back to the poop.
         It really wasn't so bad.  My new research friends went through every aspect of my 'homework,' and they then they sent me home with the necessary supplies in a white-shopping bag. At MD Anderson the white shopping is a clear giveaway for #NewPatientOnBoard. You might as well just stamp "PleaseHelpMe" on your forehead. It was difficult not to tell many sympathetic onlookers that this was nothing more than a "shitty test" but I held my tongue. I just smiled.
        Because the fact is we need to smile and laugh to work through our weird feelings about every single substance our bodies produce, regardless of what end is involved. I laugh right along with and at myself, especially in my anal (oh, so appropriate) attempts to make sure I followed the instructions to the letter. Heaven forbid my samples might fail to qualify. If there's a marker to be found then let mine be the first in line.
This one's for you,  Pat.

Earlier today I read a phenomenal post by Pat Steer, a CRC survivor I wrote about two years ago. Today she is the same woman, with the same clarity and courage. But her health is not the same.  She has stopped treatment and describes this in No More Room in the Bucket.
       Her post just happened to overlap my writing today. It reminds us to move past the  'ew factor for the greater good. If you're 50 and older, don't wait to discuss colorectal cancer screening with your doctor. Bring the topic up if she doesn't. If you live near one of these cancer centers. consider joining the clinical trial I just concluded. My last bit of  homework is now in the mail.  In the long scheme of things it wasn't much to ask.  No, not at all.

For other clinical trials, go to: www.ClinicalTrials.gov

Thanks so much,
Jody

       

14 comments:

The Accidental Amazon said...

Jody, good for you. It would so improve early detection of colon cancer and compliance with screening if people could just do a home stool test. Or even a not at home one. Anything but the dreaded colonoscopy. And you know how I feel about them, now hugely grateful that I had one & that it took out a polyp with in-situ cancer.

I just tried to get to that link from Pat & it didn't work. :( I'm sorry to hear that she has come to the big decision. That is truly shitty.

Nick Dawson said...

Thanks Jody for writing about something so important and yet taboo with a sense of humor and warmth. Also, kudos to you for taking part in a study! You are right, they are hard to get into, move very slow and usually aren't accommodating - although it sounds like your experience is quite positive.

When my dad was thinking through his treatment options, one of the things the researchers drilled in was that his protocol would likely be the same as the study. The benefit of the study, in his case, was not try something new, but to add science and measures around the protocol for future patients to be able to judge the effectiveness.

So in the end, it's really about paying it forward. Wether you are helping create a new DX test or validating an existing protocol, it's going to help someone else, and that's pretty cool!

Jody said...

Amazon my friend,

I was thinking about you and your experience while I was writing. how grateful we all are that you had the recommended colonoscopy.

The corrected link for Pat's post is:http://fightcolorectalcancer.org/policy_news/2012/05/no_more_room_in_the_bucket

Thank you for keeping her in your thoughts,
jms

Jody said...

Thanks so much Nick. I didn't even begin to discuss all the different kinds of trials there are, from those as simple as filling out a questionnaire to the one that Steve participated in, which was testing the development of a melanoma vaccine. It's an incredible process and a huge concept for survivors to get their arms around. Frankly, you can spend hours on www.clinicaltrials.gov just trying to find one where you MIGHT match. There would be great business potential for an enterprising individual to serve as a clinical trial recruiter/navigator....

Thanks so much for writing. I hope your father is doing well. All good wishes to you in your upcoming move,
Jody

Nick's post: http://www.nickdawson.net/blog/big-changes-as-told-through-80s-sitcom-intros/

Nancy said...

Jody,
I admire you for writing this post. It's difficult to be so candid about such a delicate topic. But you know how I feel about discussing delicate topics! A blood test for colon cancer detection would be so wonderful. I had a colonoscopy last summer and the prep was miserable, no surprise there. I'm so sorry to read about Pat Steer. I will check out her post. Thanks for writing this one and thanks for being part of a clinical trial.

mysemicolon.net said...

Jody, THANK YOU for this. As a colorectal cancer survivor, I'd be thrilled if people could find an easier way to detect CRC early. And, trust me, once you live with CRC treatment, poop talk is no longer a problem. Thanks for being a grownup about it.

Beth

Jody said...

Beth,
Thanks so much for writing. We can hope and pray that this test works out - and it's awesome that we can laugh and be grown-ups, all at once.#pooreport


Thanks too, Nancy. In a perfect world no topic will ever be too delicate to discuss. Anywhere we have cells we can have cancer. The embarrassment is ours and it is ours to undo. There are too many still paralyzed by cancer stigma. We need to keep talking on every level to get all topics out in the open.

BreastCancerSisterhood.com said...

Every time I hear that another person has colon cancer, I'm saddened and angry. It's not enough to just be aware that it's the easiest cancer to prevent. We must actually get a colonoscopy. Whether it's embarrassment or fear, we all need to make others aware of the importance of colonoscopies.

Thanks for becoming part of the clinical study. You are a pioneer in many regards.

Jan said...

Welcome back to the blogosphere, Jody! We missed you very much.

And thank you for participating in that important trial. You've done your fellow breast cancer sisters a huge service. I would LOVE a biomarker test to check for colon cancer. Next year I'm scheduled for my second colonoscopy and I'm not looking forward to it at all. But do it, I must, especially with my history of two bouts with breast cancer.

I hope more women close to the study centers will participate in clinical trials as a result of reading your post. xx

Jody said...

Thanks, Jan!
It's always good to be back writing:)I'm thrilled that you're going to look the trial up and I hope others are encouraged to do the same.

And Brenda,
Like breast cancer colonoscopy (because screening doesn't start until 50) is not fail-proof. I know of too many younger adults both who have been diagnosed with and have died from colon cancer. One was 43.

But yes, when I know people who are putting off their colonoscopy because they are too busy or it is "too icky' I always think, believe me, cancer is a lot worse. In the long run of life a colonoscopy is not a big deal. I'm grateful too, that even tho expensive I have insurances that covers preventative measures at 100% and I hope you to, too.

jms

Beth L. Gainer said...

Jody,

Wow. This is a great posting, and thank you for bringing up colorectal cancer. I just had my colonoscopy in February, and thank goodness it was negative. Drinking that crap was the worse part of it.

I'm so glad you are back!!

radiologistusa said...

Hello,
This is a amazing posting, and thank you for bringing up colorectal cancer. I just had my colonoscopy in February, and thank goodness it was negative. Drinking that crap was the worse part of it.

Unknown said...

Great post - great info and really informative. Fascinating stuff!
Cancer


Thank



Shahin

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