30+ Days Into Recovery/Healing
Decisions, Decisions
The first 30+ days of my recovery has been everything I was promised. A roller coaster of emotions and energy from full on happy to be alive, to the depths of wanting to die. Neither extreme lasted for long, thank goodness, with most days feeling somewhere in the middle between not-so-good and not-too-bad. Fatigue and ennui bordering on depression have been the biggest hurdles, but then I can't totally blame my cancer. COVID isolation, the on-going post-election insanity, the shortening of daylight hours combined with days of rain and/or fog, and then the still undiagnosed illness of my canine companion Scout -- these all have contributed to my sadness and depression for good reason.
I also experienced late-stage radiation side effects that I mistakenly thought I had escaped during treatment. Lightly peeling skin turned into open, weeping sores in my groin which both hurt and itch terribly. (Thank goodness for creams and salves.) But it was only after my scheduled appointment with my radiation oncologist on December 9 that I was assured it was all part of the normal shedding of radiated skin in the process of healing. In 1-2 weeks I should be better down there. Yeah!
But I also had a big decision to make earlier in the week which I had been putting off since my first meeting with my medical oncologist in September. Did I want to be part of a clinical study that might prevent the recurrence of anal cancer? Pages of Patient Advice and Rights along with detailed lists of possible side effects admittedly put me off. But a call from the Cancer Center reminded me that the window of opportunity was closing quickly, and I needed to make a decision.
Walking up to the Cancer Center on Tuesday to meet with my oncologist, I had decided that I didn't want to go backwards in my recovery and experience new fatigue, nausea, loss of appetite and possibly worse. But I also knew that in this randomized study I had a 50/50 chance of not being in the test group, which would be okay since I still would be observed with tests and scans, I just wouldn't receive the drug. And then, I was also aware that even if I was put in the treatment group, I could drop out at any time I wanted. So each step up the stairs and down the hall to the exam room, I was still weighing my options.
To his credit, my oncologist was able to answer all of my queries and allay my fears to my satisfaction. He also answered all the questions of my friend and advocate Kathryn who was with me and who I trust implicitly. So I signed the consent forms. Nevertheless, the voice inside my head still told me that I might not even be put in the treatment cohort, and even if I was, I could opt out any time.
Later that afternoon, I received a call telling me that the computerized randomization process had selected me for the treatment group. And ya' know what? I was happy! Relieved! And pleased to think that my participation might help others fight anal cancer down the line.
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So what is this clinical trial? In short, it is testing the addition of the drug Nivolumab after previous therapy for high risk anal cancer. People who have anal cancer that have a high likelihood of returning after standard chemotherapy and radiation are eligible for participation in this research study. So I guess that's me, along with 344 other people taking part in this clinical trial.
The purpose of the study is to find if adding the study drug Nivolumab after standard chemotherapy and radiation will prevent the anal cancer from returning. Nivolumab is a drug that may turn the body's immune system to attack any cancer cells that may remain after chemotherapy and radiation. This clinical study will allow researchers to find out whether this different treatment is better, the same, or worse than the usual treatment for anal cancer. The use of Nivolumab in this study is investigational for my type of cancer and is not approved by the FDA.
That said, while the addition of Nivolumab may help prevent my cancer from returning, which is the potential upside for me, it could also cause a number of side effects, which is the obvious downside. Just as I am beginning to feel better, I may have side effects that (hopefully only temporarily) set me backwards. And just because I had very few side effects from my standard Mitomycin and Capecitabine chemotherapy doesn't mean I'll react the same to this new drug. Therein was my hesitation to join the clinical trial. But that's behind me now since I already signed the consent form. Forward, march!
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For those interested in more of the details, here's the protocol for the treatment group that I'm in. Beginning this Thursday, December 17, I will be administered Nivolumab by an intravenous (IV) infusion which takes about 30 minutes. This will be repeated every four weeks. Treatment will continue for a maximum of six months or six doses of the drug or until I have severe side effects, my cancer returns, or I decide to stop. (That's my escape clause if it gets too bad.) By my calculations, I'll be done mid-May.
Assuming I successfully complete the Nivolumab treatment, my oncologist will continue to monitor my condition for up to five years. The first post-treatment visit will occur six weeks after the last dose of the drug. Follow-up visits may occur every 2-4 weeks if I have adverse reactions to the drug, or with no adverse reactions, every three months for the first two years and every six months for years 3-5. That includes the standard after treatment care but also includes some additional CT scans or MRIs and bloodwork. The additional aftercare is another carrot that enticed me to join the study.
Of course, with taking any drug comes the possible side effects. The most common side effects are fatigue, loss of appetite, nausea, diarrhea, and dry mouth (all do-able and mostly treatable) More increasingly serious side effects include lung problems, colitis, kidney failure, heart problems, swelling of the brain, blindness, paralysis, or death. As scary as it sounds, it's a lot of necessary CYA. (Think the fast-talking, tiny-print drug ads on TV.) Nevertheless, keep those positive thoughts and prayers coming, please.
Plus, if side effects become too serious, my medical oncologist can take me out of the study. I can also be removed if my health changes and the study is no longer in my best interest, new information about the drug becomes available, or I don't follow the rules of the study. (Rules? Who said there were rules?)
So that's what December and the first part of 2021 have in store for me. I'm hoping with the arrival of the Coronavirus vaccination and a new administration in the White House, two of my depressants will be eliminated. As for Scout, we're still trying to find out what's wrong with her. It may mean a trip to WSU Vet School, we just have to wait and see. It's kinda like me; I'm just waiting to see if my treatment worked. Head down. Keep pedaling.
Afterword: I am dedicating this blog post to my long-time friend, Andi Holcomb Gardner, who I have known since since junior high school. She was diagnosed with pancreatic cancer about the same time I was diagnosed with my anal cancer, at the end of last summer. I have thought about her every single day since I knew that my diagnosis came with an 85% curable rate; whereas, her diagnosis came with a death sentence. Andi passed on December 8 with her two daughters at her side. I HATE f*cking cancer!
