How do you decide when to stop a life-saving treatment?
That is the question I faced this summer. Was now the right time to stop taking pembrolizumab — the anti-PD-1 drug that Merck has exploded onto the market as Keytruda? Is it time to quit taking the medicine that has effectively saved my life?
My doctor wasn't sure; although she is an excellent physician and oncologist, she is neither a melanoma expert nor an immunology specialist. She doesn't have the full background to make this decision, through no fault of her own as there are not many oncologists who have patients that have lived this long, and this well, on checkpoint inhibitors.
My family wasn't sure either. Though most family members voice their support with whatever I do, it's not hard to see the hesitation in their eyes when we talk about next steps. Of course my mom is by far the worst; she hides non-verbal cues as well as my son "hides" under his covers during hide and seek. They trust my judgment but are hesitant to abandon medicine they know works.
When I was making this decision, the most common question I was asked was, "If it is working, why would you want to stop?" Until the Melanoma Research Alliance Scientific Retreat, I never had a good, evidence-based answer. There I spoke with several top oncology researchers who have treated patients like me, including top researchers from Penn's Abramson Cancer Center and the MD Anderson Cancer Center. The consensus among that group was they would advise a patient in the same situation to either de-escalate the dose (i.e. every six or 12 weeks instead of three weeks between infusions), or stop altogether. Since de-escalating wasn't an option – because of clinical trial design – the only two real choices were to stay the course, or go cold turkey.
So after treating the Holy Cross cancer center team to lunch, I sat down in the infusion center for my 75th, and final, infusion of MK-3475, an investigational drug on its second-ever human trial that would become lambrolizumab, then pembrolizumab, and finally, Keytruda. I was going cold turkey. And though I am not completely done with the clinical trial — I'll still give blood and get monitoring scans — there were many hugs and "thank you's" and smiles being traded at that lunch. Afterwards, my wife Jen and I stopped at The World Famous Parrot Lounge for a celebration drink, and then had dinner on Fort Lauderdale Beach with our entire family.
I am indebted to Merck for this opportunity. There are likely few people who have ever gotten 70-some anti-PD-1 doses, and almost certainly no more than a handful who have done so in a clinical trial setting. I didn't set out to break records, and Guinness hasn't come knocking yet. Somewhere, there are other patients who are going to need the data – my data – to make their treatment decision and I am glad my time on this clinical trial will help them.
Nearly four and a half years ago, I began this blog, with little more than a humorous email (which later became "The Top 10 Silver Linings of Cancer") and an enticing story about embarking on an unknown journey into recovery – or potentially end-of-life. This is post No. 200. To have made it that far — 1,817 days since diagnosis to be exact — is a nice milestone; to do so while announcing "I'm no longer an active cancer patient" is stunning. Even the most positive thinking friend couldn't have confidently predicted this. I am thankful in ways I can't fully express for the opportunity to share this journey in public, and to the Philadelphia Media Network (and my editors) for supporting me as a storyteller.
So what's next? I have no doubt that my cancer and advocacy experience will keep me on a path of helping other patients and patient communities navigate to health. Yet, having been "Patient #1" for so long, I don't really remember what life was like before stage IV melanoma. Cancer changes you (and the people who love you); in some ways, I am still figuring out who I am and have become. I suppose, until then, I will just be T.J. again.
Thanks for following along on my journey. Be well. Stay strong.