Having made the decision to try the bladder-saving treatment protocol, the next question was whether to participate in the clinical trial. For me, the decision was a no-brainer, particularly because this trial would supplement—not replace—the standard bladder-saving treatment protocol for stage II bladder cancer. In addition to surgery, chemotherapy, and radiation, patients in the trial would receive either a dose of the immunologic drug Keytruda or a placebo every 6 weeks for 1 year.
I knew about Keytruda because I had seen it advertised on television and remembered it as the drug that saved former President Jimmy Carter’s life about 10 years ago. He was one of the first patients to receive the drug to treat extensive tumors in his brain that were the product of metastasized skin cancer. As happens with about a third to half of these patients in his condition, the tumors disappeared completely.
Over the past decade, Keytruda has been approved by the FDA for a range of different types of cancer including stage III and IV bladder cancer, and it is being studied by itself or in conjunction with other treatments for many others. The theory behind this clinical trial was that supplementing the standard 3-part treatment for stage II bladder cancer with Keytruda would help prevent the recurrence of cancer in the bladder or its metastasis elsewhere. The 5-year survival rate for the standard 3-part treatment is about 75%. The hope is that Keytruda will improve the outcomes for the other 25%.
By participating in the clinical trial, I could contribute to the medical science surrounding bladder cancer and potentially help others who fall victim to this disease.
The opportunity to increase my odds of surviving bladder cancer was the most significant but not the only reason to participate in the clinical trial. Participants in the trial would get extensive surveillance over a number of years, including regular CTs and other bladder examinations. Although potentially inconvenient, I saw this as an opportunity to assure I would have the full attention of the medical experts conducting the study. The additional surveillance as well as 9 doses of Keytruda would be provided at no cost to study participants. In addition, by participating in the clinical trial I could contribute to the medical science surrounding bladder cancer and potentially help others who fall victim to this disease.
The downsides of participating in the clinical trial were spelled out in excruciating detail in the 22-page consent form, a document that undoubtedly had equal contributions from legal and medical personnel. The document had separate sections that described the side effects of Keytruda that are “very common” (20% or more), “common” (5%-20%), “uncommon” (1%-5%), and “rare” (less than 1%). These included side effects that are relatively minor and treatable, as well as some that carry the risk of significant long-term disability and/or death. Laura and I read the document with interest but also a sense of detachment. It was surreal—a part of the overall sense that it was not really me who has cancer…and, of course, that these side effects will not happen to me. I signed up to participate.
Treatment Begins
I arrived at Washington Hospital Center early on the morning of December 15 for the first step in the bladder-saving cancer treatment protocol, surgery to remove all visible cancer from the interior of the bladder. The November surgery had removed most of the primary tumor but there was still a lot to remove. The larger tumor went from the middle of the right side of the bladder to the top of the anterior wall, about 3½ inches. This surgery also removed a smaller tumor on the left side of the bladder and in situ cancer cells on the interior lining. I went home that afternoon feeling pretty good, all things considered, but under doctor’s orders to take it easy over the holidays and be ready for chemo and radiation treatments to start in 3 weeks.
I was back at the Cancer Institute a few days later to prepare for the radiation treatments. This included a consultation with my radiation oncologist and a simulation in which the technician marked me with 3 small tattoos near the waistline to identify the precise target for the radiation. These tattoos, as well as a plaster cast of my feet and lower legs, would be used to align me on the linear accelerator that would deliver the radiation at each of the 28 treatment sessions. According to the plan, I would get 200 rads of radiation at each session, a total of 56 grays, enough to kill the cancer cells in my bladder and, hopefully, not too much of the adjacent organs and tissue.
The morning of January 9 marked the start of my new routine of daily radiation and weekly chemotherapy. It was a Tuesday because this was the day that the oncologist overseeing my chemotherapy treatment and participation in the clinical trial was at Washington Hospital Center. Some people celebrate “taco Tuesday”—I came to call these “chemo Tuesdays.”
The chemo routine actually began on Mondays when I would get blood drawn to determine whether I was healthy enough for chemotherapy. Once cleared on Tuesday morning, I would go across the hall to the Infusion Center where I would be hooked up to an IV for about 4 to 5 hours. The infusions started with a large bag of saline that took a little over an hour, followed by a small bag of antinausea medications (30 minutes), medium-sized bags of cisplatin (the chemotherapy drug) and the clinical trial medication (each about 40 minutes), and then another big bag of saline to further assure that I was adequately hydrated. The routine was usually uneventful and in an odd way surprisingly pleasant. How often these days do you get 4 to 5 hours of uninterrupted time when you can sit quietly and read, check emails on your computer, and catch a few minutes of sleep? The hospital even provided a box lunch.
The daily radiation routine was short and efficient—once I made it to the hospital. For me, it was a challenge to navigate 30 minutes of morning rush hour traffic to be at the hospital for my 8:45 appointment every weekday morning. The first stop was the radiation check-in desk, where I scanned my special ID card, validated my parking stub, and picked up a plastic bag for my clothes. From there I went to the robing room, where I would get undressed down to my underwear and use the bathroom to fully empty my bladder and colon. Getting my turn in the one bathroom in the men’s robing room could be somewhat challenging, as I found myself competing with patients who were getting radiation for prostate cancer rushing back to empty their bladders—a full bladder was required for their treatments. Overall, though, the esprit de corps was friendly and supportive as my fellow patients updated each other on recent doctor visits, shared our frustration with the Washington football team, and counted down the days to the end of our treatments. Once a week, I saw the radiation oncologist to assess the progress.
I tolerated the regimen of daily radiation and weekly chemo surprisingly well. I had enough energy to continue playing tennis on a regular basis.
I tolerated the regimen of daily radiation and weekly chemo surprisingly well. I never developed any of the skin issues that commonly occur with radiation and had enough energy throughout the treatments to continue playing tennis on a regular basis. I took a few afternoon naps, usually 2 to 3 days after chemotherapy treatments, and had slight nausea following the first chemotherapy session but none after that, once I got the standard antinausea prescription. I also had successfully avoided catching COVID during this period; I would not have been allowed into the hospital and would have had to interrupt my course of treatment. With the exception of a change in my morning routine, my day was pretty close to normal.
The “Organ Recital” and Cancer Buddies
Something happens at the age of 60 or so; when getting together with friends or family, the discussion often starts with a recounting of everyone’s health issues, recent doctor visits, and the like. One of our neighbors gave it a name—the “organ recital”—and with surgeries, radiation, chemotherapy, a clinical trial, and side effects, I had a lot to contribute to the recital. I found it helpful to share with others what was going on, but I made a conscious decision that cancer would not control who I was and what I talked about, even though bladders are not the usual topic of dinner table conversation. More important, though, was the support and care that Laura and I received throughout my cancer journey. I cannot overstate how much it meant for friends to ask how I was doing or arrange to go for a walk or out for coffee when I was in the midst of treatments or complications. I made it a point to thank them for their concern—and I really meant it.
The other great source of support came from others who were on a cancer journey of their own, my “cancer buddies.” The same neighbor who first shared the phrase “organ recital” introduced me to a colleague who was in treatment for the recurrence of stage I bladder cancer. We started to get together periodically and regularly updated each other on treatments and developments. A similar relationship developed with a business acquaintance who had prostate cancer, a cousin with breast cancer, and my uncle who was battling a liposarcoma. Somehow the conversations were different because we knew the other person understood what we were going through, what it was like to have cancer and navigate the medical labyrinth. In the same way, appointments with my radiological oncologist took on a different tone when she shared her own experience with cancer.
The Cancer is Gone
On February 8, I rang the bell outside the radiation treatment room to mark the end of my radiation and chemo treatments. Two months later, I was wheeled into an operating room for surgery to determine whether the treatments had worked. In addition to inspecting my bladder for signs of cancer the doctor biopsied under the sites of previous tumors. He called a few days later to tell me that the pathology reports were clear and I was now cancer free.
Oddly, I did not feel the sense of relief and elation you would expect given the news. Once again it was surreal. In the same way as it was when it didn’t fully register that it was me being told that I had cancer, I did not fully associate myself with the news that it was gone. The mental self-defense mechanism that carried me through 6 months of chemotherapy, radiation, and surgeries was once again at work. The primary feeling was one of relief. I was glad the treatment had worked, but champagne corks were not popped in the Klaus household that night. Besides, I still had months to go in the clinical trial and the side effects of Keytruda had begun to appear.
Read part 1 of David's story »
Look for Part 3 of David’s story coming soon, where he reveals the grueling toll of treatment and the strength it takes to keep moving forward.
