I know I’ve been deliberately vague about my cancer journey since last fall save for the numerous Torturing Myself posts. There’s a reason for that—and the same reason I gave up journaling in 2003 when I was first confronted with the dreaded c-word. I didn’t want to turn my entries (and years later, blog posts) into an ongoing pity party. No one wants to read that shit, myself included.
But…
Despite my brave face, at times I still get very depressed, angry, and well…tired of this shit.
My therapist has heard all of this, and while I’m not specifically directed at my readers, I just need to scream into the universe for a minute.
Back in August, after the initial diagnosis and we were first brainstorming the best way to proceed, my surgeon said (perhaps unsprirsingly) that surgery was the best route, followed by chemo, radiation, or immunotherapy if warranted.
My experience with radiation twenty-some years ago was a breeze—until it wasn’t. I read about all the possible side effects of radiation vs. chemotheapy, and decided that radiation would have the fewest side effects. Everything was fine (despite some minor sore throat pain) until about week five of a daily seven week regimen, and then all hell broke loose. I was eating oxycontin like candy and nothing relieved the pain. But the oncologist convinced me to stand strong because once the treatments ended, the healing could begin and everything would return to normal.
He was correct. By the end of that year everything had returned to normal and there was no sign of further cancer.
Of course, what they didn’t tell you was the long-term scarring that would result from the radiation in that particular area of my throat and neck; something that wouldn’t rear its ugly head for fifteen years and impact your ability to swallow for the rest of your life. Supposedly they still didn’t know about the long-term effects, but that’s another discussion for another time.
At the time I remembered asking if I could repeat the treatment at some point in the future if the cancer returned. At that time, they said no. “You can get it in another area of your body but we can’t treat the same location more than once.”
I asked about this when I got my diagnosis last fall. My surgeon urged me to discuss my concerns with the radiation oncologist on their team. We met with him prior to surgery and he said, “Yes, I can do it in the same location now, but I wouldn’t recommend it because of the location and the very real risk of blowing out your carotid arteries.”
‘Nuff said. Remember, I need to outlive that orange pedo in the White House.
Long story short, after meeting with the regular oncologist, I decided to go with immunotherapy (vs. traditional chemotherapy). The two treatments are similar, but only insofar as they both require an IV. They work completely differently. Chemo introduces (for all intents and purposes) various poisons to your body to kill the cancer cells; immunotherapy rallies your own immune system to fight them off. The downside is that your own immune cells can sometimes turn rogue and attack your own, good cells. There are obviiously more serious side effects, but typically, they are minimal—the most common being a skin rash. How bad could that be?
Well, it turns out it can be pretty damn horrific. And the itching…OMG.
After my first bout of pneumonia—septic pneumonia that landed me in the hospital for a week—and having gotten a clean PET scan a few weeks prior to that, my oncologist decided to stop the Keytruda treatments completely (I had been at the halfway point) as he felt they had become a major contributing factor to the pneumonia.
Prior to this, the only side effects I’d experienced were a few minor pimple-like skin eruptions on my upper body.
HOWEVER…about a month ago they came back and spread with a vengeance, turning into huge, itchy spots that crusts over as they heal and now cover my shoulders, chest and stomach. It’s not shingles—everyone is in agreement on that—but it might as well be from the symptoms. I returned to the oncologist who took one look and said, “Yup. That’s Ketruda rash,” and referred me to a dermatologist for treatment.
I saw the dermatologist on June 1st. She ordered a shit-load of blood tests and in the meantime put me on a regimen of prescription corticosteroid cream and a low dose of hydroxyzine at bedtime al alleviate the itching so I can sleep.
When I followed up with her today and she asked if anything had improved, lifted my shirt she said, “Oh my! You’re worse!” After pointing out that my primary care doc upped the hydroxyzine to the maximum dose allowed a week earlier with no change, she took three samples to send to pathology to see exactly what’s going on. I mentioned that the only time I saw any relief from this was after the second week-long bout of pneumonia in April when they had me on prednisone in the hospital and discharged me with an addition week’s worth of mediation. It was only then that things returned to “normal” (the small pimple-like eruptions that were few and widely distributed). She mentioned that in the past she’d seen excellent results from Duplixent. (Have you heard of it? Of course you have. If you’re of a certain age the advertisements are no doubt littering your evening television viewing.) Today she administered an initial “sample” dose of the drug and sent me home with a four-week long, decreasing regimen of prednisone. Hopefully this helps and I’ll start seeing some improvement by the time I return in two weeks for my second “sample” dose of Duplixent. I’m also hoping that the Duplixent will be covered by my insurance (it requires preauthorization, but I’ve satisfied my out of pocket maximum for the year already); otherwise it is unobtainium and we’ll have to pursue another route.
As an aside, a friend of ours was going through Keytruda therapy for breast cancer. They pulled her off of it because it destroyed her thyroid and one of her adrenal glands.
While going over my most recent blood tests with the dermatologist today, she noted that my TSH was through the roof. I said I’d call my endocrinologist when I got home, and after doing so she increased one of my meds 140%. My own thyroid gland has been shit since the radiation in 2004, but it’s been managed through medication. Out of curiosity I went back and checked my numbers from April when I was in the hospital. It was incredibly high then. Prior to that (about two months) it was in the normal range.
So…in addition to everything else, Keytruda appparently destroyed what was left of my thyroid function as well. That would certainly explain my constant fatigue and falling asleep at my desk and while watching television. We’ll see if my energy returns after I’m on the higher dose of medication for a few days…
I’ve been doing a lot of thinking about these past nine months, and if I knew then what I know now, I never would’ve had the surgery. I would’ve taken my chances with that tiny spot at the back of my tongue. As my dear friend (a nurse practitioner) said “typical untreated squamous cell is typically 10-15 years.” Based on the lifespan of both my parents, that’s about what I would’ve have left anyway. And there are days I truly believe the treatment is worse than the initial disease.
And yet…
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