Malcolm GauldGreetings! – Been a minute since I last checked in… six months, in fact…
 Kicking off with some good news: This Monday’s (12/1/25) “every-6-months CT scan” came back No Evidence of Disease (NED). Yeah… Def, Yay!!!
NED vs. “Cancer Free” – I’ve learned not to use the more common/popular/comforting “Cancer Free” label because it oversells the positive while minimizing cancer’s ever-present threat. (It also fuels that “availabilty heuristic” mindset I’ve written about in past posts that works against the fostering of a more productive societal understanding of cancer.) NED is accurate, frank, and promising. Of course, I hope and pray that I am, in fact, cancer free, but there is really no way of knowing that for sure. Just because they don’t show up on a CT scan does not mean that cancer cells aren’t bouncing frantically around the body in search of a new place to land. Â
Bringing You Up to Date – At the time of my last email to you (June), I had just completed chemotherapy followed up by a CT scan also showing NED. I then launched into a monthly immunotherapy treatment (Opdivo) scheduled to last a year. One of the most-asked questions I get is: So, what is the difference between chemo and immunotherapy? So long as you promise not to: 1) seek medical advice from me; or 2) hold me accountable for whacky theories, I’ll offer my take:
Drano & The Cavalry – Chemo is like Drano. It brings a scorched earth attack to the cancer. The actual infusion takes 5-7 hours, the first two being just the anti-nausea portion that prepares your body to accept and accommodate the actual chemo to follow. That anti-nausea element makes things semi-tolerable for a couple days before you slip into misery for the next three or four. Among its many calling cards, it does a number on your veins. (I would tell anyone in similar circumstances: Get a port!) I had a total of 8 sessions between February and May, twice interrupted due to red-lined white blood cells, the ones that deliver immunity. Speaking of which…
Immunotherapy brings the cavalry. It multiplies the forces that stimulate your immune system and attack cancer, diseases, and even allergies. My monthly infusion process takes less than an hour. I have been able to live my life as I always have as soon as I get home. I experienced no substantive after-effects until…. in late summer, I noticed that some of the minor scrapes and cuts on my legs, those of a variety common to one compelled to chase multiple errant golf balls into the various briar patches and thorny thickets surrounding Bath Golf Club, never seemed to heel. This was followed by rashes and itching that, for me, has been worse than poison ivy.
When the Cavalry Goes Rogue – It was then that I learned one of the problems common to immunotherapy: Doctors cannot control exactly where it goes in your body. Just because it may go to work on your cancer with positive effect does not mean it will stop short of attacking otherwise healthy parts of your body. In my case, it has compromised or confused the forces that heal minor cuts and bruises. Simply put: Immunotherapy likes to go rogue and do different things to different people.
So, this week, when I showed up for monthly Opdivo #7, accompanied by the aforementioned CT scan, my MGH oncologist took a good look at the state of my legs — i.e., lesions, rashes, bruises — and decided to suspend (indefinitely) my immunotherapy treatments. Why? Well, at first, her explanation hit me as counterintuitive…
As she said — and I’m paraphrasing — “Whereas the chemo phase of your recovery treatment twice put your immunity system in jeopardy, the immunotherapy phase has shifted it into overdrive.” She went on to explain that I am now overflowing with immunity and, still raring to go after it attacked my cancer, it has sought new destinations within my body. Thus, it has begun wreaking havoc with the skin surface of my legs. She also echoed something I have heard, also counterintuitive, from other doctors: The patients they worry about are the ones who undergo an immunotherapy treatment and then neither show nor feel any side effects. Ironically, that may sound like a good thing to the patient, but to the doctor, it suggests that the immunotherapy has not taken charge of much, if anything, happening in the body, to say nothing of the actual disease being targeted.
Serenity Granted – My doc then turned my attention to the main point: Since my radical cystectomy procedure of a year ago, I have had three CT scans — including the one at the beginning of this week — and all three have come back NED. Do we know that the oncological chemo/immunotherapy cocktail is the reason those scans came back NED? No. But, that’s a helluva lot better than finding out they didn’t work at all! And therein lies what may well be cancer’s fundamental dilemma…
No matter how much news you get, you’ll want more. Those patients in need of definitive progress reports are likely in for a tough ride. You either learn to accept “not bad”… or NED… as very good or you wallow in anxiety. I know I have cancer. Right now I’m loving the fact that I currently have no evidence of it in my body. Yeah, I’ll take that.
What’s more, ask me to single out which of my 71 years has been the one where I experienced the most personal growth and serenity, I might well say this one. I’ll take that, too.
And to have this personal growth and serenity come with the bonus of so many deep friendships with folks like you — actually, maybe it’s the friendships that have delivered the growth and serenity? — well, almost makes me glad I got cancer… Almost!
Love & Onward, Malcolm
PS: (Note: See my Thoughts on Character blog — https://thoughtsoncharacter.com/bladder-cancer-me/ — for access to previous updates.)
