“Today is the first day of the rest of your life”. My mom used to say that to me. Today is her birthday and she would have been 77 years old if cancer hadn’t taken her life almost eight and a half years ago. My mom was one of those people that never went to the doctor. She was never sick! What she didn’t know was that festering inside her at age 68 was the cancer that would eventually, and too quickly take her life.
Well I do go to the doctor……I go a LOT! And I also have this damn disease of cancer festering in my body as well, but I have the benefit of knowing it’s there and getting the treatment I need to try and fight it off. In 2013 when I was diagnosed with this round of cancer (I had it before in 1999) I was given a death sentence. They told me I had about 18-36 months to live. I was told that this might stretch to as much as 4 or 5 YEARS because other than the cancer I am a very healthy individual. I was given the standard course of crappy chemo and that held off the cancer for about the first 6 months……..”chapter 1”.
After that, my oncologist found a clinical trial that I could join that may help extend my life even further so naturally I agreed to do it……”chapter 2”.
After about 7 months on that first clinical trial I was told that my tumor had started to grow again. Although that was disappointing news I wasn’t surprised. After all it was only a trial, there was never any real hope for a miracle cure (at least not in my mind anyway). And so now enter in Keytruda – MK3475 – Pembrolizumab. This drug is the latest and greatest and newest and most hopeful chance for cancer that has ever come along in my opinion. Heck, former President Jimmy Carter claims that this is the stuff that CURED his cancer!! I was given a chance to join a clinical trial for this drug based on genetic testing that identified a certain defect that Keytruda was targeting. Did I join the trial? Damn right I did…….”chapter 3”.
I have been on the Keytruda clinical trial since March 2015. I started the trial in Pittsburgh and then eventually was able to transfer to Ohio State so I could be closer to home…..much less driving. At first the trial didn’t appear to be working. In fact my tumor GREW the first month or two to the point that it closed off my stomach and forced me to be on a feeding tube. I didn’t think it was working but the doctors insisted on “giving it time” and “ to give it a chance to work”. You see, Keytruda is a drug that is designed to allow your body’s own immune system to fight off the cancer cells. The first few infusions of the drug were just getting my immune cells ready for battle. Finally after about 3 months of infusions the scans started showing that my tumor was shrinking! About 4 months after that I was able to get rid of that stupid feeding tube because it appeared that my immune system had this cancer coming to it’s knees. I have been dealing with all sorts of symptoms and side effects along the way but overall, I’ve been getting better! My weight is back to normal and stabilized, I can (and do) eat everything in sight and my energy level is the best it’s been in a very long time.
Yesterday (June 24) my awesome wife and I went to Ohio State for infusion #27. The visit started out not unlike the many times we have been there to this point. Only on this particular visit we were about to learn the results of the latest CT scans that were taken 2 weeks ago. Every 8 weeks I get CT scans to learn how the tumor/cancer is behaving. This trial protocol says that any tumor growth would mean that I would be excused from the trial.
As I said, this visit had started out just the same as all the other visits we’ve had at Ohio State. First the nurse asks you a bunch of questions, then the trial coordinator comes in to have a discussion. Anne and I could both tell right away that something wasn’t right. She was kind of fidgeting around and not really giving us clear answers to some of the questions we were asking. She just kept saying stuff like “you’ll have to talk to the doctor about that”. When the doctor finally came into the room we were both nervous to hear what she had to say. And what she had to say wasn’t good.
My tumor had grown. I was off the trial……….”chapter 4”.
I’ve been told some pretty crappy things over the past 17+ years of my life regarding my health but this was REALLY hard to take. I broke down immediately and started to cry. It was terrible, no other way to say it. The first thing that popped into my head was “oh my god, I’m going to die!”.
My oncologist was very encouraging and said that they already have a plan in place to have new genetic testing done, and that it’s very possible that another one of my cancer mutations may have already been identified for treatment. So the plan is to go back to Ohio State on Tuesday to meet with another doctor to discuss a new biopsy and join another clinical trial that allows for biopsies and genetic testing to be conducted for the very reason of identifying new treatment options. Although I’ve already had genetic testing done, that was done 2 years ago and with the ever-changing world of cancer treatment it’s very possible that another treatment and/or trial may be available for me.
Today begins a new chapter in my life. Anne and I are getting ready to head out the door and go see a Detroit Tiger’s baseball game. I’m still living today and I’m going to keep on living for as long as I can.
Like my mom used to say…………today is the first day of the rest of your life. Happy Birthday Mom.