I am a stage four metastatic melanoma survivor who collectively has endured ten operations, gamma knife surgery on a brain metastasis, radiation treatment and six clinical trials.
My clinical trials included two vaccines (CancerVax and a multi-peptide vaccine); biochemotherapy, a nasty cocktail consisting of three chemotherapies (Dacarbazine, Vinblastine and Cisplatin) and two immunotherapies (Interferon and IL-2), all highly toxic; a maintenance treatment of high-dose IL-2 and GMSCF; a combination therapy of CarboTaxol and Sorafenib (a BRAF-inhibitor); and finally, an immunotherapy called Yervoy (anti-CTLA antibody or Ipilimumab) that was the first drug approved for melanoma in over 15 years. I received maintenance therapy of Yervoy for almost eight years.
While I’ve learned that nurses are generally the most comprehensive sources of information about your treatment options and side effects, they are not the only source. I always wished that I had other patients to speak to other than those I met in the infusion room sitting in a chair next to me. I’ve made it my mission to speak to any melanoma patient who asks for my help and through my friends and family have spoken to patients around the world. If you'd like to learn more about my trials and tribulations (pun intended), you can read my book Thriving Through Cancer.
I had just had a short haircut and was sitting on the steps in my house under a skylight playing with my one-and-a-half-year-old daughter when my wife looked down and noticed a spot on my scalp. So I went to a dermatologist who conducted a biopsy. Two days later I had the results and was immediately referred to the John Wayne Cancer Institute for treatment.
My first clinical trial was for a vaccine and each arm of the study included an immunotherapy booster. When I started trial three, biochemotherapy, it included two immunotherapies, IL2 and Interferon. My sixth and pivotal trial was with ipilimumab, which became Yervoy once approved by the FDA. In each case, there were limited options available to me and I chose to keep pursuing treatments to stay alive. Whether it was immunotherapy or chemotherapy or surgery, I wanted whatever gave me the best chance of preventing recurrence or later surviving.
Treatment on Yervoy was not bad at all. I would drive about three hours to San Diego from Los Angeles post-treatment and get into bed as I would get achy by then and really be ready for sleep. Next day I would head to the gym. I had some of the main, initial side effects which I was told were positively correlated with a response to the drug, so I was happy to get them. I developed severe diarrhea which was treated with steroids. I developed a horrible itch which is not easily treated. But the alternative was death so I'm OK with that. My advice is listen to your nurses and doctors and report all side effects as instructed. There is never anything to be embarrassed about and they are there to help.
Immunotherapy saved my life. In my humble opinion, nothing else compared. The side effects were tolerable and treatable, and the disruption to my life was minimal. Other than the one day I was required in Los Angeles, I never skipped a beat.
Probably the most significant surprise is how people react. There are some whom you expect to be there every step of the way for you who are incapable of dealing with cancer and treatments. And there are others who show up out of virtually nowhere who really get it and are there for you.
Given that I enrolled in six clinical trials in my journey, I am obviously a believer in participating in clinical trials. The first kept cancer away for at least five years, while the last saved my life. Along the way, the other trials mostly kept me alive while waiting for the ultimate trial that succeeded. Immunotherapy simple fits in that realm and is absolutely worth trying if your doctors believe it is the best option for you.
Provide guidance and encouragement to others going through their journey with cancer immunotherapy treatment.
*Immunotherapy results may vary from patient to patient.
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