Medical Update: The Windy Path

I’ve not posted since late June and a lot has been happening. This is going to be a series of updates with free-writes and photos because I’m not sure how to capture everything in an informative and linear way. It’s going to be a series of posts because it’s been a lot and it’s too much to fit in one entry.

By the way, if you are reading this, thank you for or caring about what’s happening, and how I’m doing, and coping, and about all I’m learning. I appreciate it and hope in some way it’s beneficial for others as well.

Update:
From a medical perspective, I’m still on the ipi/nivo immunotherapy combination. I’ve had three infusions, spaced three weeks apart, for now, and which will continue every other week if a scan and my CA-125 show I’m responding (scan will be in September). I’ve finished radiation and my tumor is SO MUCH SMALLER it’s amazing. I’ve been to Canada and had whole-body hyperthermia, loco-regional hyperthermia, and mistletoe infusions and a bit of a vacation/adventure with my friend Beth.

It’s been a lot.

I feel amazing.

I’ve been getting LOADS of questions about all the varied treatments. I’ll share some detailed information as well as free-writes and photos. Here’s a description of combination IPI/NIVO put in my patient notes portal by my oncologist which is not a standard of care for advanced ovarian cancer but which we are tying in order to maximize the benefits of the trial I was on (how REGN4018 worked by tagging my cancer cells), and in response to me not being able to get Cemiplimab (the drug that was supposed to find and attack those tagged cells). We figured that since I’d been through so much already, we wanted to know for sure if I am (or am not) a candidate for immunotherapy. That made sense to me especially since I was not eager to get on more chemo with or without Avastin (my next options).

“Ipilimumab (Yervoy^TM) is a CTLA-4 targeted antibody, and nivolumab (Opdivo^TM)‎ another checkpoint inhibitor targeting PD-1. The serious toxicities are dermatitis, pneumonitis, colitis, hepatitis, and more rarely nephritis, encephalitis and hormonal dyscrazias (thyroid, adrenal and pituitary). The more common side effects are: skin reactions such as rash, itching, hives, redness and dry skin, diarrhea, abdominal pain, nausea, anorexia, anemia, fever, and arthralgias.  

TREATMENT: Initially nivolumab 3mg/kg and ipilimumab 1 mg/kg both IV Q3w x4 then nivolumab 3mg/kg IV Q2w max. of 42 doses. The NRG RPhII of nivolumab versus nivolumab and ipilimumab for recurrent or persistent ovarian cancer was a ‘+ve’ study (Zamarin D, et al. J Clin Oncol 2020;38(16):1814-1823). Single-agent PD-1 blockade has only limited efficacy in epithelial ovarian cancer (pembro ORR 7-9%) and combination ipilimumab nivolumab blocking both CTLA4 and PD-1 appears better. The protocol was ipilimumab for 4 doses (every 3 weeks), followed by every-2-week maintenance nivolumab for a maximum of 42 doses. 100 patients were allocated to receive either nivolumab (n = 49), or nivolumab plus ipilimumab (n = 51), with PFI of < 6 months in 62%. Six (12.2%) responses occurred within 6 months in the nivolumab group and 16 (31.4%) in the nivolumab plus ipilimumab group (odds ratio, 3.28; 85% CI, 1.54 to infinity; P = .034). The median progression-free survival (PFS) was 2 and 3.9 months in the nivolumab and nivolumab plus ipilimumab groups, respectively, with a PFI-stratified hazard ratio of 0.53 (95% CI, 0.34 to 0.82); the respective hazard ratio for death was 0.79 (95% CI, 0.44 to 1.42). Grade ≥ 3 related adverse events occurred in 33% of patients in the nivolumab group and 49% in the combination group, with no treatment-related deaths. PD-L1 expression was not significantly associated with response in either treatment group.”

Per my oncologist at Mass General (in my patient notes)

It’s a bit daunting to read about the possible side effects, with half of the people taking the combination having serious adverse events (but at least not death), especially given the response rates aren’t as high as I’d like. I’m hoping that with the REGENERON trial priming and tagging my cancer cells, the radiation inducing a possible “abscopal effect,” and me doing alternative/complementary approaches all in a compressed time period will provide me with some synergistic success (i.e. miracles).

My goal is always to increase the effectiveness of treatment, reduce the toxicity of it, while living and preparing like I might die in my sleep or need to go into a hospital soon (but without obsessing or dreading that possibility because it’s one we all face every single day of our lives). And, I must mention this important fact: I FEEL GOOD.

One of my new mantras is – IT FEELS GOOD TO FEEL GOOD.

I never want this to be something I take for granted.

It feels good to walk without being winded or worried about my heart rate.

It feels good to have an 11 a.m. cup of iced coffee and be able to stay up and out in the world til 6 p.m. or 7p.m.

It feels good to go to the gym, and even to the same class as my daughter (heated barre, though I won’t do that again soon – as I’m still recovering).

It feels good to be able to socialize without feeling depleted for days.

While I don’t push myself beyond my limits most of the time, if there’s something I really want to do and it’s later in the day, I can do it every once in a while and that gives me more freedom, more choices, and that’s always welcome. But also, I have become a person who weighs, measures, and calculates my energy and rest and is about as dogmatic and protective about doing so any first-time parent adhering to a baby’s infant nap schedule (because life, when rested, is better and life while exhausted, can be freakin miserable). I’m grateful that improved health as allowed me more flexibility and that it’s at a time when my daughter is home for the summer.

Plus, as my dear friend Lynn reminded me and I think about often – feeling well, sleeping well, eating well, living-loving-exercising well and having time-energy-desire and the ability to be with people I love and/or have time for creative endeavors… well, these are ESSENTIAL markers of wellness even if there’s no blood test for any of them. These are worth noticing, appreciating, and celebrating because they make life wonderful (no matter how many cancer cells are multiplying, or not).

I have the best friends and they ground me when I get freaked, like when I had to skip my second immuno treatment because of high liver enzymes. I’d schlepped into Boston, had labs done, had an oncology consult, and was sent to the infusion area for treatments. Then, I got a call that there would be no treatment but I shouldn’t go home because I might need a liver scan or ultrasound in case something more serious was happening. What’s more serious than cancer, you might wonder? When cancer goes IN the liver and impacts how it functions.

It was terrifying, made me fear the cancer was spreading fast, and also fueled my general anxiety bout how toxic the drugs I am are/have been, or if I was damaged by radiation or the REGENERON trial (or all of the above).

I’d had high liver enzymes once before but that was when I was popping Tylenol like tic tacs for all my meals and snacks non-stop for a month thanks to a non-stop fever.

However, my oncologist said I could skip a liver scan/ultrasound unless I became symptomatic or my liver enzymes didn’t begin to go down a week later. And even though things have not leveled out as quickly this time when I recovered from the Tylenol toxicity in one week, they do get lower each week, and have been trending in the right direction for a month and are good enough that I’ve been able to keep getting immunotherapy.

But it was daunting for a moment and another sobering reminder that even when I feel good, anything can happen and I can’t take feeling decent or being alive for granted (nor should any of us). It was especially concerning when my super optimistic naturopathic doctor seemed alarmed and guided me to come off most supplements and off-label drugs because he deemed none of them nearly as important as my ability to keep getting immunotherapy – the only heavy hitter that might slow the cancer growth.

So I took a break from anything and everything that might be burdening my liver even though we aren’t totally sure what caused the spike and took the liver enzyme spike as a sign to get myself to Canada to try whole-body hypothermia, loco-regional hypothermia, and mistletoe infusions since I was done with radiation and in-between two immunotherapy visits.

So, LOTS has been happening and I’ll go into more detail, with free-writes and photos in the next blog posts. But for today, I’m feeling decent, responding to something (or a combination of the things) I’ve done, and I hope that continues.

I get my blood tested every two weeks going forward and will have a more comprehensive picture of what’s happening inside my body when I get my next CT scan next month. But the next few posts will be about what’s been happening in my life, head, heart, and soul.