A year and a half ago, the PEACOCCC trial invited me to become PEACOCCC number 2. The care I received was unlike any I had ever experienced. I had regular meetings with a team of research nurses. My blood was taken every three weeks and tested. They scrutinize my blood pressure, breathing, weight and internal chemical make up. Top consultants knew every inch of my body, the good, the bad and ugly.
I started regular infusions of Pembrolizumab, an immunotherapy drug and the latest weapon in the battle with cancer. It has minimal side effects compared to chemotherapy.
Then at the end of November, I was told that this wonder drug had stopped working on me, and I was no longer eligible for the trial.
All that care, closeness, and comradery suddenly stopped. I remember asking, “what’s next?” One response was, “there is always chemo.”
That news crushed me.
Immunotherapies were the future. The news media reports regularly on stage 4 patients in remission all because of immunotherapy. Why won’t it work for me?
It took a macrobiologist to explain that one to me.
Luckily Dr. Rebecca Kristleleit, my consultant for the PEACOCCC trial, heard my frustration and called me later that week. She came up with a plan, a backup plan and a back up to the backup plan.
Honestly forget generals in battle, you need Oncology Doctors.
That’s how I eventually, (after several months delay courtesy of our friend COVID-19) ended up on my new trial . . . PATRIOT. (Yes, I hum the “Star-Spangled Banner” every time I tell people that.)
PATRIOT is why I am now on a drug that doesn’t even have a proper name. It is called AZD6738. Sounds more like a pesticide to me, but I don’t need a fancy name if it works.
AZD6738 is an ATR inhibitor. It messes with my DNA so that my cells don’t repair themselves. Normal healthy cells have alternative ways of repair. But hopefully, the cancer cells will die off and disappear.
This makes me the “anti” Wolverine for all you X-Men fans.
It’s not a fun treatment. It is closer to chemotherapy than immunotherapy. It comprises of tablets taken twice a day, twelve hours apart on an empty stomach. The morning dose isn’t too bad, except its not the only drug I have to take on an empty stomach, so my morning is filled with taking drugs, drinking water, and waiting for coffee or tea.
The evening dose is harder. It’s easy when I’m home. But if I’m out I have to try hard to remember, don’t eat, don’t drink, turn everything down until the golden hour- one hour after I take the tablets.
Then there are the side effects. AZD6738 makes me nauseous, fatigued, causes pain in my bone and joints, coats my mouth with a taste of soap, sour milk and chalk, and makes me smell horrible. It doesn’t matter how many showers I take or coat my body in scented creams. I stink. Thank God for social distancing!
But if it kills the cancer. Bring it on!
Now I am working on how to keep going through this new treatment.
That involves lots of exercises, yoga, sleep, home cooking, playing and walking my dog, sewing, more rest and self-massage.
I’m afraid to admit it, but I now have a strong relationship with a foam roller and two pink balls.
Who said you couldn’t be 40 and adventurous?
If anyone else has any suggestions on how to improve my physical and mental state, please comment below. All ideas are much appreciated.