I Spy a Clinical Trial: Weighing the Benefits Against the Unknowns

Sometimes your doctor may recommend a clinical trial, a new approach that is being compared to standard treatment to see which is more effective. New LBBC Blogger Judy Weinstein writes about weighing the pros and cons of a trial she joined, ISPY2.

IMG_5627When I think back to the weeks following my breast cancer diagnosis, I picture myself in the middle of a tornado moving along at a frightening speed. One day I was pondering what to pack for my upcoming 25th wedding anniversary trip to Italy and the next I was in a swirl of medical appointment mania. I had to choose a hospital, an oncologist, and a surgeon, endure a slew of medical tests, take it all in emotionally and then break the news to close friends and family. Along the way, as all newly diagnosed cancer patients do, I took a crash course in understanding breast cancer and my particular type so I could make informed choices about my treatment. Just the vocabulary alone was enough to make my head spin! Words like triple-positive, HER2-positive, and neoadjuvant therapy were thrown around and I needed to understand it all. Just when I thought I had it all figured out, another new word was put in front of me that I needed to learn: ISPY2.

No, this was not the fun game you play in the car when you are bored and you say, “I spy with my little eye something blue,” and the other person has to guess what you are seeing. ISPY2 was a Phase II medical trial that, because of the exact nature of my cancer, I was eligible to be a participant. Questions came flooding in. Aren’t trials for people who are dying and have no other options? I know that trials are important to advance research but do I want my body to be the guinea pig? How could I live with myself if I found out the experimental medicine I was on actually doesn’t work, or has long term side effects that the doctors didn’t find out about until years later? Facing chemotherapy was scary enough. Did I want to be a part of a trial that had so many unknowns attached?

I learned that the goal of the trial is to pinpoint how each individual tumor grows and target treatment to a specific tumor type.  Today, most women affected by breast cancer receive standard chemotherapy. Some breast cancers respond to this treatment. Others do not. This study screens promising new targeted medicines that could increase success rates while reducing side effects. After much reading, talking to my doctors and to LBBC, and pondering it deeply with those closest to me, I decided to take the plunge…. well, only halfway. I found out that I could be screened for the trial, told which drug I would be getting, and THEN decide if I wanted to continue. At any point in the trial I could opt out.

When I learned that the arm of the trial to which I had been assigned was a drug that is already approved and in use to treat metastatic breast cancer and that experts are now trying to learn if it can prevent metastatic disease, I warmed up to the idea. When I heard the excitement in my doctor’s voice that I had been assigned this particular drug, I decided to move ahead.

With a trial you get the benefit (and the hassle) of much additional monitoring. As part of this trial, I did the chemotherapy before surgery (neoadjuvent therapy). So two and a half weeks after my very first chemo treatment with the trial drug, I had an MRI which showed that my tumor had already just about disappeared!! Learning early on that the cancer responded quite well to this treatment helped carry me emotionally through the remaining 4 months of chemo treatments. I would not have had this knowledge if I wasn’t participating in the trial.

Since the trial drug is designed to target only the cancer cells, I believe I also fared better physically during my chemotherapy than I would have on the standard care. For anyone who can be treated with this approach to personalized cancer therapy, I am proud to say I helped that become a reality.

I am so grateful for all the women before me who have participated in a trial to bring this drug and many others to the forefront of my cancer treatment. I am so thankful for the philanthropic money that has gone towards researching such a complicated illness. I am forever indebted to my doctor and all the others who spend their lives immersed in groundbreaking treatments. I am now much more likely to celebrate many more wedding anniversaries with my husband. For all of the above, I am one lucky woman!

Judy Weinstein is 49 years old and lives in Philadelphia, home of LBBC. She is the Executive Director of a non-profit that provides recreational education to adults and kids. Judy has three sons, ages 20, 18 and 14.

Learn more about clinical trials on lbbc.org. 

5 thoughts on “I Spy a Clinical Trial: Weighing the Benefits Against the Unknowns

  1. Thank you, thank you, thank you for participating in this trial. When my son was diagnosed with leukaemia in 2001 I discovered that almost every child diagnosed at my hospital, and across Canada and the States, was randomized to a clinical trial—they were de rigueur. When I was diagnosed with TNBC in 2013, I couldn’t believe there were no trials for me, or for almost any of the women I meant while going through my four months of chemo. It seems like the race for a cure isn’t happening for many of us. So thank you for grabbing your opportunity and paving the future for others!

  2. I too am participating in a clinical trial, where I receive Herceptin even though I’m HER2 negative. This trial is being done with women who have metastatic breast cancer to hopefully prolong survival and for those with early stage cancer, like myself, to help prevent recurrence. I too had to struggle to decide whether to participate. The major downside was (is) that participating in this trial prolongs treatment dramatically. While I’m done with my chemo and radiation already, I will continue to receive Herceptin infusions until the day before Thanksgiving. By the time I finish, I will have been getting one infusion or anther for more than a year. That is a big commitment.
    What swayed me into doing this trial is the good it could do for the women who follow me. I know that I am getting the care and treatment due to women before me who agreed to be part of a trial. I’m paying it forward. If my inconvenience in time can help save lives in the future, it’s time well spent, I think. And hopefully, one of the lives it will save is my own.

  3. I would be interested to know the name of the drug you received and whether it is progressing to phase 3 trials. Thanks.

  4. Pingback: ‘Why Should I Participate?’ Asking Myself and My Doctor Questions About Joining ISPY2 | Living Beyond Breast Cancer's Blog

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