So it comes down to this. My life…my future…my existence…comes down to two very important words:
Ipilimumab and Nivolumab
Ah, it just rolls off the tongue, doesn’t it. I’ve lived 39 years on planet Earth and I’ve heard my share of health advice (“get 8 hours of sleep per day”, “get 150 minutes of moderate aerobic activity per week”, “better eat your Wheaties”) — but now, in order to live a “healthy” life moving forward, the advice I’m adhering to is “get your Ipilimumab and Nivolumab infusions”!
Admittedly, it’s easier to call my survival agents by their shortened nickname: IPI-NIVO. Those are the drugs that will be used in combination to “release the breaks” on my immune system, allowing my own body to attack the cancer cells within me. IPI-NIVO also makes for a better reference on a future tattoo…not sure where on my body I would fit “I responded to Ipilimumab and Nivolumab”! Cancer treatments, especially those used against advanced melanoma, have undergone a revolution of sorts in the last five years. Call me lucky…if there were ever a time to be diagnosed with stage iv metastatic melanoma, it’s now. The truth is that doctors have a better arsenal of weapons to fight melanoma than ever before…and the best weapon at the current time is IPI-NIVO. That’s not the only weapon available, but given my condition and my age, that’s probably the most aggressive treatment (not offered as a Clinical Trial) that has evidence of success — and so, I place my life in the hands of Ipilimumab and Nivolumab. In IPI-NIVO, I trust.
For those of you that just jumped to this post and you’re wondering how this is ‘phase II’, please refer back to my phase I blog (Introducing the Newest Member of the X-Men).
I received my first infusion yesterday, at my Oncologists’ office located in a strip mall. The ride to the office was unbearable. I tried to play it cool, but I was a nervous wreck. All I had done for the last week was look up the side effects of IPI-NIVO (or, if you’re playing at home, these drugs are often referred to by their Bristol-Myers Squibb birthnames: Yervoy® and Opdivo®). Wait, there are potential side effects to your life-saving treatment? Yes, of course. Would you like a rundown on my potential reality? I thought you’d never ask!
Here are the potential side effects of my IPI-NIVO treatments:
- Fatigue – big deal, so I get to take more naps (sarcasm). This is probably a given.
- Skin Issues – rashes, itching, new lesions, skin peeling (yuck!).
- Colitis (intestinal problems) – diarrhea, blood/mucus is stool, abdominal cramping.
- Pneumonitis (lung issues) – new/worsening cough, chest pain, shortness of breath.
- Encephalitis (brain inflammation) – headache, fever, memory problems, seizures.
- Hepatitis (liver problems) – yellowing of skin/eyes, nausea, vomiting, bleeding/bruising.
- Hormone Gland Problems – thyroid, pituitary, and adrenal glands could stop working.
And then there’s the black box on the medical wallet card that simply states death as a potential side effect. Thanks for that one. Warm and fuzzy.
Of course, more likely is that I’m a lucky one…that my positive energy, genetic make-up, and prayers from friends/family result in only the most minor of side effects. Yeah, I’m going to go with that option. And I should note that my oncology team has been using these drugs for longer than they’ve been approved (they were part of the Clinical Trial that got these drugs FDA approved). They’ve seen all the symptoms and they know how to manage them…I’m in good hands.
Back to the car ride. I’m a nervous wreck and my wife is verbally abusing every driver on the road — no worries, they can’t hear her. And yet, she feels the need to critique their ability (or inability) to follow rules of common courtesy on the road. My wife and I have a running joke between us…that if for no other reason, I have to beat cancer because if she’s the one that teaches my daughters how to drive then humanity is screwed. For some reason, I don’t let things (like other drivers on the road or students that call me a Dick — for the record, it’s pronounced Rick) bother me. Somewhere between college and adulthood I lost that trigger mechanism that upsets me…it drives some people close to me nuts, but the truth is that I don’t sweat the small stuff. Well, except for my wife’s driving…
My wife and I get into a meaningless argument during the car ride about not answering a question I asked…and it reminds me of the first time I said “I love you” to her. We were taking a walk up in Green Bay, having a delightful conversation when something possessed me to say “I love you” for the first time. Unfortunately, at the exact time I said it we were stepping over a dead snake (it’s not uncommon to find dead animals on the road that leads to the in-laws house on the Bay). So, my next words that followed ‘I love you’ were ‘oh, shit’. Of course, I was referring to the dead snake that I almost stepped on…and not in reference to my declaration of love for my future wife. But she didn’t take it that way…so we walked in silence for another 30 minutes (she’ll claim it was only five minutes…but I’m the one with the blog so I get to tell the story the way I want). The point is, the argument in the car was stupid and was truly just a way for me to displace my fear and anger about my impending treatment. To this day, I have no problem telling my wife that “I dead snake her”…and she somehow finds that endearing.
If you can’t tell, cancer has a funny way of reminding you of random (meaningful) memories…that’s has happened a lot in the last four weeks. Wow, has it only been four weeks?!?
So, I sit down for my very first IPI-NIVO treatment. All the worries about side effects are placed on hold as my doctor describes that the majority of people don’t really feel the side effects of the medication until the third treatment — in other words, IPI-NIVO will hold my fears hostage for another six weeks. I’m scheduled for four infusions, as they are called…each one three weeks apart. Some people only get through two infusions before the side effects create a need for an alternate treatment plan…others can get through four treatments with no problems. Fingers crossed on four treatments with no side effects.
My wife and I strike up a conversation with two brothers sitting next to us. The one brother has a rare case of cancer and just got back from MD Anderson (TX). He’s involved in a clinical trial that pretty much involves blood transfusions where they inject your blood with healthy T-cells and then inject it back into your body — crap, is that what’s next for me? He explains that he was diagnosed five years ago and IPI-NIVO wasn’t even available when he was diagnosed…so I’m “lucky”. He and his brother are so kind…are my wife and I that nice? If we are not, we need to be. They share their story and ask about what I’ve gone through…I’m a newborn compared to his experiences.
Across the way we start up a conversation with another young man…my wife and I both think he’s in his twenties, but later on it’s revealed his in his mid-to-late 30s. According to him, he was the second person in the greater Chicagoland area to undergo the IPI-NIVO treatment. We find comfort in his experiences as he explains that IPI-NIVO was great, it essentially removed/shrunk 90% of his tumors and his only side effect was constipation. Ummmm, that sounds promising…I can learn to enjoy prune juice. Unfortunately, since his IPI-NIVO infusions he’s been unable to shrink the remaining 10% of tumors…leading to experimental injections directly into his remaining tumors. I hear the nurse talk to him about his pain and the need to reduce his dosage of morphine. This was my first realization that there’s probably still a long battle ahead after IPI-NIVO. Buckle up, it’s going to be a bumpy ride.
Betwixt (I always wanted to use that word..the blog seemed like a perfect opportunity) my IPI and NIVO treatments, I’m taken to a very cold room for another CT-Scan. I allow my claustrophobia to get the best of me, freaking out in the middle of my scans. Remind me next time to carry anti-anxiety pills on me any time I go to the doctor’s office. The purpose of the CT-Scans today is meant to provide baseline data so that they’ll be able to tell the effectiveness of the IPI-NIVO treatment. The technician is very patient with me as I eventually calm down and get the scans done. We are told that we won’t really know if IPI-NIVO worked until six weeks after my last treatment (my last treatment is scheduled for September 2…so for those of you good at math, I won’t know if IPI-NIVO was effective for me until October 14). That’s approximately 19 weeks after diagnosis.
Nineteen weeks. In nineteen weeks I will have gone from my entire world crashing in on me to possibly being cancer-free. Realistically they’ll never be able to call me cured. That’s not a word they are allowed to use in stage iv metastatic melanoma diagnosis. Instead, I hope I get to use some new terms and nicknames in my cancer status. If IPI-NIVO is successful, I’m referred to as a RESPONDER. That’s not sexy, but my wife is already making “I responded to IPI-NIVO” t-shirts. I call dibs on the first one. Another term/nickname that’s often used in the cancer world is NED…that’s the nickname I want. It stands for ‘No Evidence of Disease’. It may be a temporary diagnosis, as metastatic melanoma is known to resurface and rear its ugly head in other places, but if I can get to NED status I have given modern medicine time to develop new treatments…I will have created new memories with my daughters and gotten that much closer to walking them down the aisle.
Let’s end this on a positive note. As I finished my IPI-NIVO treatment, Dr. Richards came out to visit me. He had the results of my CT-scan…AND. THEY. WERE. POSITIVE. We knew anecdotally that stage I was successful…lymph nodes had visibly shrunk to the naked eye, no more coughing or shortness of breath, fatigue had subsided…but we didn’t have physical evidence. Dr. Richards said the results were positive. My wife, not accepting that as an answer, asked Dr. Richards for a more specific analysis. She asked, “if you had to put a percentage on how much Steve’s tumors have shrunk, by how much have they been reduced?” His answer, without blinking, was 95%.
Phase I had successfully reduced my tumors by approximately 95%. Now, that’s not an exact number as Dr. Richards was just put on the spot by my wife…but as approximations go, I’m not going to complain about a 95% reduction. Furthermore, he explained that the CT-scans showed no evidence of tumors in my lungs or liver anymore. And all of this was coming off the heels of my bone survey, in which the doctor examining my bones and comparing them to a PET-scan two weeks prior refused to believe it was the same person being tested. He said my bones showed no evidence of cancer anymore…and that it was “nearly impossible” for that to happen over a two-week period. Maybe those were magical pills in phase I. Maybe cancer truly does hate asparagus. Maybe there truly is power in prayer.
In my professional life, that’s a solid A. In my cancer life, that’s not good enough. I need to keep fighting until it’s 100%, an A+. And there’s no extra credit available, kiddos. I have three more IPI-NIVO infusions and an additional 6 weeks after that before I know my next percentage…Nothing less than 100% will do. Even if I’m at 100%, I’m facing a new reality…injections every other week for the next two years, scans every 6 weeks, an immune system that won’t shut off and as a result, will probably destroy my thyroid gland. A hyper-awareness of any symptom that needs to be reported to my oncology team for the rest of my life…the “sniffles” are no longer a symptom I can simply ignore.
I’m not a superhero. And I’m definitely not super-human. But I’ll settle for being a dad that walks both his daughters down the aisle. And it doesn’t do me any good to get 95% of the way to that goal. I’m still a slave to modern medicine. I’m still forced to eat asparagus every day (thanks Cindy, I dead snake you). And I’m still accepting of your positive thoughts and prayers…keep ’em coming. This war is far from over.