Month: August 2026

“Absolutely not. I want to exhaust every other option first.”

She must have seen the look on my face before I spoke a single word, because after I said no, she immediately said, “I understand completely and will respect your wishes. But know that IV steroids will be the fastest way to clear this up.”

I said I didn’t care; that I’d seen enough of the inside of that damned hospital.

She brought in her senior colleague, and between the three of us we came up with a course of treatment: that did not require any further hospitalization—at least not for now.

• • • Double Duplixent dosage (every week instead of every two weeks)
    • Go back on a high dose of prednisone for the next six weeks, gradually lowering the dose and then, if successful, begin a long-term, low dose regimen.
    • Continue with the red-capped pain killer if effective and she will write a new script if I need it for longer than what I have on hand will cover.
    • Ordered a tub of the Triamcinolone ointment for all over toso use and a tube of Clobetasol for between my fingers/toes.
    • Refilled the “magic mouthwash’ I got from my oncologist several months ago.
    • Followup in two weeks, and two weeks thereafter.

If things don’t improve after the course of prednisone (six weeks) at that point we wil reluctantly agree to the intravenous route. Both doctors pointed out that this may be available on an outpatient basis (since I had that midline and tolerated it well).

As I told my doc today, “It’s not the itching. It’s not the blisters. It’s not the general ugliness of this condition. It’s my utter lack of being able to concentrate on anything because every waking thought is consumed with this condition. (Even now, it’s taken me nearly two hours to write this one, simple post.)

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Even though I’ve been off Keytruda for six months, its effects continue to rear their ugly, ugly heads.

You may have noticed I haven’t been posting with the same wanton abandon as usual these past few days. It’s because I have been consumed 24/7 with the itching and the recent, sudden breakout of blisters from the Bullous pemphigoid, the Keytruda-induced rash that has every inch of my body from shoulders to knees now looking like a pepperoini pizza.

I’ve been camped out in front of the television rotting my brain with Youtube videos during waking hours and not really in much of a mood to post anything.

(Not my photo, but a very accurate portrayal of your host from shoulders to knees.)

The rash is forming because the protein strings that normally form to bind the epidermis to the dermis are being attached by my own immune system, thanks to Keytruda. I suppose this shows it’s doing its job against any errant cancer cells, but c’mon guys…these are your own cells you’re attacking.

Again my thoughts return to last October: “A skin rash is the most common side effect of Keytruda therapy. Skin rash? How bad can it be?”

It’s been six weeks since my dermatologist put me on the biweekly injections of Duplixent for the rash and I can’t say there’s been any improvement whatsoever. If anything, it’s gotten worse because the signature blisters that had been conspicuously absent up to that point were now appearing with alarming regularity. And the itching! OMG. My palms itch. The space between my fingers itch. Every damn blister and bit of rash itches. By Thursday it had gotten so bad (and the usual home remedies, hydrocortisone cream, etc. were completely ineffective) I tried to get in to see my dermatologist. It normally wouldn’t have been a problem, but she was out of the office all week. I’m seeing her Tuesday.

Today it’s so bad I’m almost watching the blisters—blisters that rupture incredibly easily after having been strangely quiescent for a few days now—appear almost in real time. And the intense itching they bring combined with their easily friable nature do not good bedfellows make! If you pop the blisters (which is apparently okay to do) the itching stops, but then you have the usual pain of a popped blister to deal with. And the same reason these damn blisters appear in the first place is also the reason it takes them weeks and weeks to heal. Damned if you do, damned if you don’t. And right now I’m feeling very, very damned.

I’m at the point tonight where I just want to sit and cry.

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