Today, the summer solstice, marks the half year mark of the discovery that I had Metastatic Melanoma. My wife Victoria again wrote a wonderful newsletter to my extended family, and I got her permission to pass it on to you. (She’s really, really good with words.)“This will be a more lengthy update…because it’s been awhile, but for you “get to the point/don’t bury the lede/cut to the chase/what’s the bottom line” types—all’s good. (I’m one of those types, so I sympathize. Although I just drove you crazy using four chestnut’s when one would have sufficed, didn’t I?)
“We’ve just returned from Rick’s three month MRI, and the news is good. Everything in his brain is stable—which is an amusing adjective for Rick’s brain. It’s good news. The left frontal lesion, which had shrunk from its original size, now looks like “treated disease” or what’s left after the melanoma died off. The original lesion in the right occipital lobe is stable—same size, same shape—which likely means that what is showing up is inflammation and cell disturbance from the original CyberKnife treatment. The “pretty significant” swelling in his brain remains, but is also stable. There was in May a new finding of something going on in a lining of the right ventricular horn, next to the occipital lobe. At that time, the doctors felt it was likely inflammation/radiation effect, but were also concerned it could be disease spread and were looking to this MRI to provide more information. The fact that it is stable reinforces the opinion that it’s not melanoma—as Rick’s doctor said, “Melanoma doesn’t just sit there.”
“So—it looks like no active melanoma in his brain. And that’s, as you’ll recall, on top of the disappearance of melanoma from his body.
“Since my last update, he’s had two incidents of very severe headache and nausea, the first of which sent us to the emergency room and the second of which was treated in the medical center (more pleasant and much less expensive. Our new mantra: Don’t Go to the Emergency Room! Although his doctor was ready to send him there until Rick suggested, gee, couldn’t we just wait the five minutes it will take to see if the CTscan we just finished shows any new problems? Why, yes, I guess we could wait. Oh, look at that, no new problems, let’s just give you some anti-nausea medicine on top of a fresh dose of dexamethasone and send you home.) It was unclear both times what caused the “crash.” With the first, he had finished tapering off dexamethasone (which he had been taking to combat inflammation in the brain) and the timing of the “crash” suggested it was steroid withdrawal/inability of his adrenal system to produce its own cortisol, as did the fact that the symptoms resolved with a 2mg dose of dex. But no one (least of all Rick) wants him to stay on dexamethasone, and we do want to figure out if his adrenal system is working (which you can’t tell with that much dex floating around in your brain) so after consulting with an endocrinologist, he switched to hydrocortisone, which more closely matches the cortisol his body should be producing and which, with a slow tapering off, should coax his adrenal to restart production. He passed the 72-hour dex withdrawal half-life with no crash, so it seemed he was in the clear, but then three days later had his second crash.
“So, then, the inquiry became, is this killer headache and nausea caused by the continuing inflammation in his brain, or is it something more akin to a good ole’ migraine, perhaps triggered by all the stuff going on or just because he (and a bunch of you Ackerlys) get migraine?
“A very good consultation with his very good Neurologist suggested that initiating migraine treatments—one to ward them off and one if they should nonetheless occur—is warranted, provided today’s MRI didn’t show anything nefarious. So with everything stable, he’ll begin once again to try to get off the dex, get on the cortisol, coax his adrenal gland back into production and ward off migraines. All good.
“A little look ahead…
The events of the last couple years have made me hesitant-to-paranoid about any speculation about the future. Don’t say it! Don’t write it! The gods have an overly ironic sense of humor.
“However, just between you and me, there are some good evidence-based indications that Rick’s future could be…a future! For people with melanoma who have a good response to nivo—like Rick—the response tends to be durable. Unlike, say, lung cancer, which responds to nivo for some months but then tends to reoccur, once melanoma is eliminated it’s unlikely to recur and if it does recur, perhaps a year or so later, it tends to respond again to reactivate of nivo treatment. Doctors do tend to keep people on nivo for up to a year after there is “no evidence of disease” in part because the drug is so new they just don’t have enough data to know when it may be safely discontinued. But there are people who have had to discontinue early due to side effects, and their response has been durable. Today, Rick’s doctor said he’d like to keep Rick on treatment for a year, and that he would look into switching him to once-a-month treatments, which could mean that Rick’s looking at 12 more treatments…and that could be it! Life could be…pretty normal. But don’t tell the gods I said that.
OF COURSE—it could go another way. But don’t tell the gods I said that, either.
“Unless something pops up, there will be ongoing scans every three months or so. And I hope, nothing to tell you.”
Friends, I am enormously grateful for all your support over the course of the last half year. Thank you, and special thanks to Victoria for putting her playwriting and acting career on hold to get me through this. One of our favorite lines of all time comes from a New Yorker Cartoon of a board room where a guy is saying: “So you say that it’s going to be ‘win-win,’ but what if it all goes bad-bad and we lose-lose?” Let’s not give the gods anything to laugh about.
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