So, my scans happened.
One of my tumors -the largest one- shrunk. The other four grew. This to say, I didn’t respond to the Ipi/Nivo this time. Now, before you go blubbering on the subway (Dana), know that I consider this to be good news. I hope I can convince y’all to do the same.
Had I responded to this round of immunotherapy, I would have continued on with the protocol – receiving infusions of just the single agent, Nivolumab, 75mg, every two weeks, indefinitely. Let me remind you that despite the amazing response I had two years ago, which afforded me an entire year without disease, I was still on the Nivo when all that new disease cropped up in my gut. So if, last Friday, I had gotten the news that I had been hoping for, I would have gone forth always waiting with bated breath for the next other shoe to drop.
Friday marked my first appointment back with Dr. Melissa Wilson, who has been blissing out on new mommyhood for the past three months. When she first came into the room (which I made her do twice, since my camera wasn’t rolling yet), we all exchanged warm hugs, catch-uppy stuff and baby photos. Then Melissa looked at Ariel and I and scrunched up her nose. I knew immediately what would follow. As she gave us the rundown of the scans (progression of my existing cancer but no new disease, thank fuck), neither Ariel nor I so much as flinched. “What’s next?”
We learned that, since my scans three months ago (when the ‘what’s next?’ elicited a shoulder shrug and a ‘weelllllllll’ before listing some pretty unsavory options), two new clinical trials have opened up. The first trial combines Nivo (240mg) with another immunotherapy agent called Urelumab. From what I understand, the side effects would not be much different than the ones that I’ve experienced or have been at risk for on the Ipi+Nivo. The first cycle is eight weeks, at which time I’ll be scanned to measure the results. The second trial combines Varlilumab with a cytotoxic agent called Glembatumumab, which Melissa described as a’tumor grenade’ – the drug is activated in your system and literally blows up cancer cells. Unfortunately, they also harm healthy cells, so the side effects would be along the lines of those associated with chemotherapy.
These are both phase one trials – both drug combinations have been proven for safety but not yet for efficacy. There’s, like, NO measurable data out there. None. The handful of patients currently on trial one are mostly responding… at least to the point where their disease is stable. I was told that someone on trial two, whose health and quality of life was severely compromised by his cancer, is functioning fairly normally after just one infusion of the tumor bomb drug. The doctor who is treating him called this the most dramatic response to any treatment she has ever seen.
I’m going with trial one… not just because I can’t pronounce the trial two drug names and would rather not lose my hair, but mostly because the Nivo/Urelumab is ONLY available to me RIGHT NOW. There’s only one slot left in the trial at NYU, and it’s only available to patients who have just failed certain immunotherapy combos. Like me. The second trial just just just opened, and I was assured that it will be an option a couple of months down the road, if need be.
So instead of getting 75mg of Nivo every two weeks, I’ll be getting 240mg of Nivo and another promising immunotherapy drug. Something new I learned this week is that the more immunotherapy drugs you get, the more adept your immune system becomes at killing cancer. T-Cells have memory, so the effects of immunotherapy are collective. Kathy, an NP on my oncology team, recently said to me, “Jen, we have patients who go through ten different courses of treatment and the eleventh one works, and then they’re healthy for years and years.”
I see this as kind of like a student going to all different math tutors, trying to learn a particular concept. Maybe the first teacher almost gets through, and the student successfully solves a few problems, but is still scratching his or her head. And then a few more tutors help to slightly improve the student’s understanding. Then, just the right tutor walks in and presents the concept from just the right angle and the student has that lightbulb-over-the-head moment. I have been white-knuckle holding on to Kathy’s words – and to the fact that insanely rapid progress in Melanoma treatment means that maybe the tutor that can produce MY lightbulb moment is just finishing up grad school. Ok, I’m done nerding out. The bottom line is that there is hope. There is a lot of fucking hopeful hope.
The past three months have been emotional hell – not so much because I was scared I was going to die as for the fact that I simply didn’t know how I should feel. I was trapped in a holding pattern. I hadn’t the foggiest idea of what 2017 might look like, whether there were risky surgeries or antiquated treatments as hail mary’s on my horizon. I couldn’t make any tangible plans , couldn’t even buy plane tickets to Florida for the upcoming wedding of two of my closest friends. It felt like someone had pressed pause on my spirit. Now that I have a plan A aaaand a plan B, and the confidence that plans C,D,E, and F are already in the pipeline, I finally feel like I have some semblance of control over my world again. I feel like I finally have the energy to jump back on the positivity train. I mean, yeah, I still have a bunch of tumors in my gut. But I ain’t gonna let those bitches stop me from smiling and striving. I’ve often talked about how cancer has waged war on my body. Well, now it’s time for me to wage war on cancer. And lucky me – I’ve got tumor bombs in my pocket.