He whispers "courage" in my ear

This experiment of combining treatments for metastatic melanoma is starting to take its toll on me. I remain committed to seeing it through, but the physical effects of both daily radiation of the brain and systemic infusions of ipi are beginning to mount.

The worst side-effect is pruritis, otherwise known as itchy skin. After about mid-afternoon each day, my skin starts to crawl. The usual nostrums—Benadryl and hydrocortisone cream (1%)—have no effect. My oncologist has prescribed something called gabapentin that may be helping, although it’s too soon to tell for sure. I hate taking drugs in general, most especially those that have untoward side-effects of their own.

Both my oncologist and I would like to avoid falling back on oral corticosteroids, which would surely end the pruritis. They work by dampening the response of the body’s immune system to irritated nerve fibers in the skin, which is causing all this itchiness. That is, ironically, the silver lining: my immune system has been revved up by the two ipi infusions I’ve had, which is very much the point of the exercise. Pruritis is not necessarily a marker that ipi is knocking out cancer, but it’s a positive sign.

So in the absence of a better strategy, I grin and bear it. And scratch the rash when I can bear it no longer.

Not quite bald,
but getting there

I mostly solved the problem of my hair hurting by having it buzzed off. The stubble that’s left continues to fall out, but at least now I’m not pulling out long hair by the fistfuls. My scalp is also sensitive, but it seems the radiation I’m getting keeps the rash from spreading there. I finished my third week of radiation this morning, so I only have five more sessions. It will be a great relief to have that ghoulish routine over with.

This combo therapy to which I’ve submitted is wearing me down, but the fact remains that I still have the energy to run most mornings. Rigorous exercise is the third leg of my treatment regimen and I'm determined to stick with it, even as rainy weather finally returns to the Pacific Northwest. My best hope for controlling the melanoma is my immune system. This can be done by drugs and/or radiation, and it can be done by diet, rest and exercise. Running is way more uplifting than what the doctors prescribe.

An interesting, albeit rare observation that’s been made among patients who have received both radiation and ipi is something called the abscopal effect. The evidence is only anecdotal, but localized therapy (in my case, the brain) has in a handful of patients triggered a systemic antitumor immune response. The authors who published a report in the New England Journal of Medicine have been sufficiently impressed by their observations that they’re pursuing clinical trials in which these effects can be studied.

I don’t put much stock in an oddball phenomenon like this, but as one of the few patients who have had this combination therapy of ipi and whole-brain radiation, it’s encouraging just the same.

A final observation I can make at this stage of things is related to my psychological health. While I was practically euphoric after I got home from my hospitalization in early August, just so very grateful to be alive, I find my morale slumping now as I move deeper into the unknowns of my treatment plan. Neurosurgery is definitive: you have a brain tumor, the docs remove it, they stitch you up, and providing you survive the surgery intact, everything gradually gets better. In the last three weeks, since I embarked on my “ipi-rad” journey, every day seems harder. It’s like entering a long, dark tunnel with no light shining at the far end.

This depressing imagery isn’t helped by the unknown impact of the possibly delayed effects of radiation. However it may eventually affect my cognitive abilities, it doesn’t seem to have yet. Ellen might be the better judge of this, but I believe she’d agree. I do seem to have a harder time concentrating on a task, however, like writing or reading. Beyond a doubt is my utter disinterest in most affairs that previously occupied much of my time. I’m amazingly content right now to just hunker down and ride this thing out for a few weeks.

Despite my whining, I continue to hold fast to God’s promises that he is with me through all of this. I hear him almost daily whispering “courage” in my ear. I continue to be awed by the knowledge that many friends and even people I’ve never met persist in their prayers for me. It’s hard for any of us to sustain sympathy for people with chronic diseases, so I don’t take for granted the gift that these prayers are. They have been gratefully received by Him and passed on to me through his enduring love.