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A Happy Update

After seven years of remission, the cancer had returned to my lungs. I decided to rechallenge with immunotherapy. After all, it had worked so well before. Even with the risk of an autoimmune reaction it was a gamble I thought worth taking. The big question was if and when the side effects would come roaring back.

My third immunotherapy infusion brought on fairly serious joint pain, especially in my left knee, leaving me hobbling and my wrists very sore.  This can happen — because the brakes are essentially taken off the immune system autoimmune side effects such as arthritis, colitis and diabetes are not uncommon. In my case the discomfort was bad enough that I decided to stop immunotherapy and focus on getting pain relief, so I started taking prednisone, 60 mg per day, after we returned from a long weekend in Chicago to celebrate my mother’s 90th birthday. (It’s been an eventful month!). 

CT Scans of my chest, pelvis and abdomen followed a few days later and nurse Virginia called me with the news from the radiologist report on my drive home to Keene from Boston. I was navigating traffic but the gist was that three tumors in my lungs are shrinking away. The actual wording in the report:  “Since April 19 2022 two previously large solid nodules have nearly disappeared and a third is substantially smaller. There are no new or growing measurable lung nodules.”

“It’s great news,” Virginia said. “You’re clearly very sensitive to immunotherapy. It’s somewhat unusual to see this strong a response after only three infusions.”

It was such a relief to hear her words, and Katharina and I savored that news. We will be monitoring the response and are hopeful that, like last time’s which lasted seven years, it will be a durable one. 

 

At the Cancer Conference

Note: Among other things, this longish post addresses the anxiety of knowing something’s very wrong with a key part of your body after you thought it had been fixed; the state of kidney cancer treatment now and in the future, the cost conundrum; and the psychological toll that having advanced stage cancer takes on us and our families.

The setting is the 2016 Kidney Cancer Symposium,  co-sponsored by Beth Israel Deaconess Medical Center, Dana-Farber Cancer Research Institute, and Harvard Medical School. Think of this as a bonus chapter to Immunopatient. Who knows, there may be more. Thanks for reading. As always, I welcome your comments.

I walked slowly to mask my slight hobble into the lobby of the Marriott Hotel in Newton, a suburb of Boston.  I found my event – The 9th Annual Kidney Cancer Symposium – listed on a flat panel television screen next to the reception counter.  The medium-sized room turned out to be in a far corner of the hotel’s sprawling first floor. Down one long carpeted hallway after another, I tried to focus on maintaining a stride with good form.

Continue reading At the Cancer Conference

Immunopatient on the Air: Radio Interview about Cancer, Life, Immunotherapy, Lessons Learned

John McGauley is a talented writer, newspaper columnist and now, radio host on WKBK in New Hampshire. I was honored to be his debut guest to discuss my new book,  Immunopatient. I’ve been working on it for several years, and  Hatherleigh Press is publishing it this fall. You can order it here.

 

 

Immunotherapy researcher Gordon Freeman takes stock

It had been almost a year since I had last visited pioneering cancer researcher Gordon Freeman in his office at Dana-Farber. On this blustery fall day I was using a cane, hoping that the reason for my limp and sore thigh was tendon and tissue strain, not new cancer or complications from treatment, recent surgery, and radiation.

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Gordon Freeman

The security guard in the lobby printed me a temporary ID card and pointed the way to the staff elevator that would take me to the fifth floor.

“You’ll have to swipe the ID once you get in the elevator,” she said. “Otherwise you won’t be able to get up there.” Continue reading Immunotherapy researcher Gordon Freeman takes stock

Beating the Worry that Comes with Cancer

For a Stage IV cancer survivor I’ve got a lot going for me:
— Clean brain MRIs for more than a year; cancer free from the neck down for more than two.
— My older son is getting married in a few months. My younger son, who graduated last May, just got word he’ll be teaching in Austria next year on a Fulbright program.
— My wife and I support each other, and we’ve weathered the storm of a Stage IV cancer diagnosis, surgeries, radiation treatments, forced semi-retirement, and the uncertainty of a cancer diagnosis.
Despite my good fortune at being a complete responder, so far, in a clinical trial that I am fortunate to be part of, I can’t shake feelings of unease.

Continue reading Beating the Worry that Comes with Cancer

I’m not religious, but I appreciate your thoughts and prayers

A former work colleague sends me the occasional email to check in, and always mentions that he prays for me every day. A devout Catholic, and a low-key, capable, and helpful telecommunications professional, Steve is one of dozens of friends, colleagues, acquaintances and relatives who has been thinking and in some cases praying for me during my illness. I can’t thank them enough.  Continue reading I’m not religious, but I appreciate your thoughts and prayers