American Cancer Society Article

The American Cancer Society has written an article about Elvira's and my adventures with immunotherapy and made it a Top Story in the Stories of Hope section. Please check it out!

Staying on Track and Chewing Longer

Elvira and I rode the rickety elevator to the second floor, where we passed through a short hallway to the Oncology/Hematology Department. Familiar faces met us there and checked us in.

We had brought reading material (Louise Penny's mysteries), but I barely had a chance to open my book before a nurse called my name and took me in to check my weight, oxygen level, blood pressure, and temperature. All okay, except my weight had leveled off over the past two months. I could use a few more pounds because it's been very windy in Santa Barbara lately.

I returned to the waiting room, but once again it was only a minute until the nurse returned and escorted us to Dr. Onco's office. (Dr. Onco is the name I use in Melanoma without a Cause.) It was not a big office and sparsely decorated, but I imagine the department chair will have a larger office with a better view in the new Cancer Center being built down the street.

Dr. Onco reviewed the results from my blood work and saw no problems. He mentioned that he had attended a conference recently where the variables associated with immunotherapy were discussed, including the critical question of why the drugs work on some melanoma patients and not others. Immunotherapy treatment is so new that many aspects of it are still puzzling, and researchers are apparently busy collecting and comparing data from people like me.

Which may explain why Bristol-Myers Squibb has contacted me, requesting access to my medical records. Actually, I contacted the company first on their public website, thanking them for producing drugs that have had such a beneficial effect and telling them I'd like to send a copy of my book to the CEO. Their response didn't explain why they wanted access to my records, but of course I was willing to provide it. I just wanted to check with Dr. Onco first, and he said, tongue in cheek, that maybe they wanted to use me in one of their Opdivo TV commercials. I replied that if that was true, I would only agree to appear if he went with me.

After confirming that I was still on track for scans in June, he approved me for treatment. Chris was the R.N. who set me up for my dose of Opdivo, which would take about an hour to pump into my veins. My veins seem to be getting harder to pierce, for both the lab techs and the oncology R.N.s, and he tried my hand as an alternative to my wrist or the crook in my arm. The vein resisted, however, and he reverted to my arm. The needle went in there surprisingly easily. Go figure.

While I was receiving my treatment, a Sansum dietitian named Sarah came in to offer suggestions on my diet and answer any questions we might have. We talked about what I've been eating and how I might enhance my diet to gain weight. She had good ideas and was more helpful than any other dietitian or nutritionist I'd ever met. When I told her that my sense of smell was basically non-existent, she said that I could smell my food even as I was chewing it because there was a passage to the olfactory system from the mouth. It was possible, she suggested, for me to enjoy the flavor of my food more if I chewed it longer. Interesting . . .

When Sarah left, it was countdown time for my treatment. I'm always a little nervous before and during my treatments, and always eager for them to be done. Finally, the pump beeped, and Chris came in to flush the drip system so that I would get every little bit of the Opdivo. A few minutes later, Elvira and I walked out of Sansum and high-fived. We had taken another step toward recovery.

One day at a time.

Interesting Immunotherapy

It's been almost a year since my diagnosis of metastatic melanoma. A tough year, for sure, but also a year of tremendous progress. My vital signs were good yesterday when I went in for my treatment, and Elvira drove me home afterward, full of Opdivo and positive thoughts.

I've been posting my immunotherapy story on national cancer sites, and representatives from three of them have contacted me. AIM at Melanoma has invited me to attend a conference, Cancer.Net has asked me to do a guest blog, and the American Cancer Society interviewed me for an article in its Stories of Hope series. This interest seems to stem from the newness of immunotherapy and the possibility that it will be a viable long-term treatment not only for melanoma, but for other cancers as well. Let's hope so.

I've also heard directly from a few people who are dealing with a diagnosis like mine and have read Melanoma without a Cause. One couple was just beginning their fight against the disease and wanted to know more about immunotherapy from a patient's perspective. Another couple was a lot like Elvira and me, close in age with an active life style that has come to a screeching halt. They seem like very nice people, but like us, have a long way to go in their journey.

Do I believe immunotherapy is truly a miracle drug? Do I believe I'll go into remission and have many more years here on earth with Elvira?

Absolutely!

As Hub (Robert Duvall) in the movie Secondhand Lions says to The Kid, "Sometimes the things that may or may not be true are the things a man needs to believe in the most."