Clinical trials and the value of smart friends

Krysti Hughett (right) and me (10+ pounds ago) at Camp Kesem, where we were picking up our daughters.

It’s kind of ironic. In the first few years of college, I was a serial dater. I’d date a guy for a few months, then it would end and I’d start a new relationship. Now it seems like that with my treatments. I’ll go along fine, then get my scans at the two- or three-month mark to find out there’s a progression and I have to start a new treatment. I think I liked my college days better.

Seriously, this has been quite a week. Monday I picked up my PET scan results. This has been my practice for some time now since I’ve been consulting with out-of-town oncologists. It allows me to bring the results to them for my appointment and save me the agony of waiting to hear about it from a doctor. Since my last results were iffy and I knew my tumor markers were up, I was prepared for the worst. I felt relieved there was only a small progression.

We had a great visit with the oncologist at OSU James Cancer Center. He suggested I enroll in a Phase I trial, which I was vehemently opposed to at our first appointment. Since then, I had done some research on Breast Cancer Trials and found many trials that sounded very interesting. My doctor’s reasoning was it would open up options for me and it would be good to do now that I’m healthy. Who knows, I may be the first to try the next great thing. So Mike and I drove home almost excited about the possibilities.

Then I got on Facebook and asked for feedback. I got plenty. I am blessed to know so many knowledgeable and caring people, several of whom review trials and are in the research industry. A few of my friends have participated in Phase 1 trials themselves. Some told me, “No way, you shouldn’t do this!” Others gave it a thumbs up. It gave me a lot to chew on, and I’m still not sure what to do.

In the midst of all this cancer crap (pardon my French), my mom was rushed to the hospital on Monday night when an artery ruptured in her nose. Thankfully she has been moved from the ICU to a regular room and is recovering, but when she first entered the ER, her heart stopped and she had to be revived. I was beginning to understand the meaning of the song, “Rainy Days and Mondays Always Get Me Down.”

It really helped me yesterday to talk with my friend Krysti Hughett, who definitely fits the “miracle survivor” category. Krysti has been living with stage IV inflammatory breast cancer for seven years. If you pay attention to statistics, the average life expectancy is two years, but Krysti is anything but average. I call her “Resource Queen” because she seems to have inside knowledge of all breast cancer perks — from Image Reborn’s free retreats to Utah to Camp Kesem, a free, week-long camp for kids of cancer survivors.

Krysti also knows a thing or two about breast cancer research and clinical trials. For two years, she has been a participant in a Phase I clinical trial targeting a protein called PI3K, which  stimulates tumor cell growth and survival. And her tumors are shrinking. Actually, Krysti has been on numerous Phase I trials, which I believe has been key to her long-term survival. She helped me dispel the common misconception that Phase I trials are basically guinea pig productions. People with Stage IV cancer, as I’m learning, are often disqualified from Phase III trials as we’ve been on so many different treatments. The key is finding a Phase I trial that has been around long enough so they have a good amount of information already about its safety and side effects.

I’m still weighing the options, but I have a call into the sponsor of the trial she participants in to see if I qualify and am also waiting to hear back from OSU to see what they have for me. If it doesn’t work out, I will probably go on Affinitor, which was recently approved by the FDA to help reverse resistance to Arimidex, a treatment for estrogen-positive breast cancer.

Right now, the weather is unseasonably warm and beautiful, so I’m going for a walk. There’s science behind the value of exercise, but I’m just going to enjoy for the sake of it. Tonight I’m going to a wine glass painting party and perhaps I’ll even drink a glass. As I said, it’s been quite a week! Hope you have a great weekend!