The Unwinding of the Miracle - Julie Yip-Williams Page 0,103
tumors remaining stable), the abdominal and pelvic MRI showed an enlarged peritoneal lymph node as well as a questionable spot around my uterus. The latter may be postsurgical “stuff,” but it is impossible for us to know without another surgery. In addition, my CEA continues to rise. Dr. A.C. is not a fan of the current treatment (irinotecan and Avastin). Who could blame him? This recycling of prior drugs was really a last-ditch effort by me to try the only remaining likely effective treatment available in the hope that these drugs’ prior use had not as yet desensitized my cancer cells to them. Dr. A.C. believes that continuing with the irinotecan and Avastin may make us feel good because it seems like we are doing “something,” but he doesn’t think that we would actually be doing anything beneficial, at least not for much longer. There remain two FDA-approved drugs for treating colorectal cancer, one of which is so toxic I swore I would never take it and the other of which is highly unimpressive and tantamount to a waste of time.
Dr. A.C. then asked me if I wanted to do something “crazy.” I had to hear what his “crazy” idea was, of course. Because he doesn’t believe that single-agent immunotherapy will work with the specifics of my tumor biology, he thinks we need to attempt combined immunotherapy, and the drugs he has in mind and has access to are ipilimumab (brand name Yervoy) and nivolumab (brand name Opdivo). Both are FDA-approved drugs that have been used with success to treat metastatic melanoma. Each drug forces two different receptors on cells that constitute part of our immune system to identify cancer cells as unwanted and thereby allow the immune system to kill them. Dr. A.C. would also throw in a little radiation therapy (probably directed at that peritoneal lymph node) to trigger an initial immune response and jump-start the immune system. This would be done “off trial,” meaning outside of a clinical trial.
Sounds exciting, huh? Crazy always sounds exciting, but then there are certain complications. First, there’s the matter of getting the drugs for off-label use, since the FDA hasn’t approved them for colorectal cancer. Dr. A.C. seems to have some connections with the pharmaceutical companies, though, so I think he would succeed, although he himself said it wouldn’t be easy. More concerning to me is that the use of the drugs—known as anti-PD1 and anti-CTLA4 inhibitors, respectively—would preclude me from future clinical trials that include the use of these or any other anti-PD1 and anti-CTLA4 inhibitors. Of course, this is only a concern if I want to participate in clinical trials.
Dr. A.C. said he would probably opt for a clinical trial over “crazy.” He wants whatever trial I do to be one with combination immunotherapy. He says he will talk to his contacts at Memorial Sloan Kettering, Columbia-Presbyterian, and Johns Hopkins, all places that have strong immunotherapy departments. If I want to go for trials, I will also have to do the research myself. It’s a daunting task.
Most of the trials available are Phase I trials, trials where the experimental drug is being tested for safety, not effectiveness. That’s a frightening thought, isn’t it? I’ve heard people say that the odds of a clinical trial working are 5 percent. I think they’re much less than that, more like 0.1 percent.
Josh believes it’s worth “fighting” based on that 0.1 percent. I don’t agree. Why should I allow myself to be treated like a lab rat, poked and prodded, monitored, scrutinized, suffering who-the-hell-knows what side effects? Why should I diminish the quality of whatever time I have left with my children when the chance of success is so small? Why bother when the endgame is the same?
I’m tired. I’m so very, very tired, so tired that I don’t want to do anything at all, not “crazy” stuff or clinical trials. For those of you who don’t live with metastatic cancer, who haven’t undergone all the surgeries and treatments, can you possibly understand the depth of my fatigue—physical, emotional, and spiritual? I don’t think so. It’s the kind of exhaustion that tests not just any courage I have but also the tremendous love I have for my husband and children.
I’m tired of feeling the strain of living as normal a life as possible under the constant threat of death. Of combating the jealousy and anger upon seeing the grandmother who has the privilege of taking her grandson to school and the