Randy Hillard – Michigan
I never really had any symptoms of stomach cancer. In 2010, I was a Professor at Michigan State University and was Provost for Health, responsible for the Medical and Nursing Colleges. I thought that I was in great health. I was at the Michigan State University Student Health Service Halloween Party in 2010, probably wearing some kind of silly mask. I got a little out of breath climbing one flight of stairs and went to see my primary care doctor. It turned out that my hemoglobin was 7.0, when it should have been 14.5-16.5. Somehow I had lost half of my blood without even noticing. I had never had any other symptoms. Maybe I had some low grade nausea once in a while, but doesn’t everybody?
I had a colonoscopy and an esophagogastroduodenoscopy (EGD) soon afterwards. When I woke up, the surgeon who had scoped me showed me a picture of a very nasty looking ulcer in my stomach. My colon, however, looked good, which made me happy because I thought that I probably had colon cancer. That night I went to bed thinking something like “good, all it was just an ulcer,” but I did not feel quite as happy as I thought I should. As I was drifting off to sleep, I had a vision of a huge Day-Glo crab skittering across the ceiling of my bedroom; it is the closest thing to a hallucination that I have ever had.
The next afternoon, I called my surgeon’s office to see if the results of my stomach biopsies were back yet. Unfortunately, my surgeon was out of town that day; so, I went into the electronic medical record system and looked up my own chart. (Since I am a physician in the same practice with my surgeon, I had access, although the practice guidelines discourage looking up one’s own medical record.) The pathology report read “moderately differentiated intestinal type adenocarcinoma of the pyloric region of the stomach.” My first thought was, “I’m dead.” When I told my wife about my diagnosis, she asked “Are we going to be OK?” I answered “No.” As a physician, I was all too familiar with the frightening prognosis of stomach cancer. I got lots of imaging (both CT and PET), and none of it showed evidence of spread outside of the stomach. These findings made me feel a little more optimistic, since the prognoses are so much better for early disease than late disease.
In a couple more weeks, I had stomach surgery. Before anesthesia, I signed papers saying more or less “take whatever you want and do whatever you want with it.” I did not know what organs I would wake up without. It turned out that I lost most of my stomach (which had no microscopic evidence of cancer at the margin of the part removed, which was a good sign). I also lost my gallbladder, a biopsy specimen from my liver, about 30 lymph nodes and a lot of my peritoneum (the membrane surrounding the abdominal organs).
I was in the hospital for about a week, getting lots of opiates, which left me largely amnestic for the whole hospitalization, which is probably just as well.
On the day of my discharge, my cancer surgeon shared the pathology report with me. The report was T4N3M1, which is Stage 4 disease. T4 means that the tumor had gone all the way through the wall of the stomach; N3 means that I had over 7 lymph nodes (I actually had 20) with evidence of cancer and M1, meaning that I had a metastasis, in my case to my peritoneum. My wife says that I cried when I got the results. I do not really remember that, but I was devastated.
I met my medical oncologist the next month. My primary care physician came to the appointment with me, and both of them spent over an hour answering all of my obsessive questions, for which I will be forever grateful to them. Being a physician and an obsessive, I had read everything that I could find about metastatic stomach cancer, and the prognosis looked so bad that I considered not having chemotherapy and just waiting to die. Being a psychiatrist, I realized that I was sort of out of my mind. Fortunately for me, my tumor over-expressed the HER-2 protein, and Herceptin (trastuzumab) had been approved for stomach cancer just weeks before I was diagnosed. It had been approved for breast cancer with the HER-2 protein 13 years before. About 20% of breast cancers and 20% of stomach cancers are of this type.
I received infusions of Herceptin and oxaliplatin (Eloxatin) infusions every three weeks for seven cycles. Then I received total abdominal radiation for 25 days. During this time, I had lots of stomach cramping, nausea and diarrhea. My oncologist prescribed everything for the nausea: Zofran (ondansetron), Compazine (prochlorperazine), dexamethasone, Emend (aprepitant), lorazepam (Xanax), and even dronabinol (Marinol), which is pure delta-9-THC in sesame oil. All that, particularly the Zofran, helped. The dronabinol left me completely unable to function, though, at the dose it took to decrease my nausea. Also, I was vomiting up a lot of the pills. I got a medical marijuana card and a couple of puffs made me non-nauseated and non-catatonic; so I was in the bizarre condition of smoking dope in order not to be stoned! I was able to stop using it shortly after finishing the radiation.
In addition to the radiation and infusions, I took six Xeloda (capecitabine) tablets 5 days a week. I continued the Xeloda for two years. I am still getting Herceptin infusions every three weeks. I am now five and a half years out from my diagnosis and have no evidence of disease. I am tired a lot of the time and have diarrhea most of the time and nausea occasionally. I have an unpleasant tingling in my palms and soles (dysesthesia) and feel sort of chemobrained (cannot remember stuff). All that seems like a small price to pay, though, for my survival so far. Herceptin helps most people with the HER-2 protein, but I am totally lucky to have had an “exceptional response.”
I have signed up for the National Cancer Institute’s “Exceptional Responders Study,” and the NCI has samples of my tumor to help them figure out why my response has been so good and how to make other people have what are now exceptional responses. I returned to work after being on disability for 9 months and was informed within 10 minutes that my administrative job had been abolished. Again, I was fortunate, in that I am a tenured professor. Since returning to work, I have made cancer my main professional focus.
Like most stomach cancers, except those at the very top of the stomach (the “cardia” region), my stomach cancer was caused by infection with the bacteria, Helicobacter pylori (H. pylori). It is usually acquired in childhood and persists for life. Most people never get symptoms from their infections, but about half get dyspepsia (chronic upset stomach). About 20% get peptic ulcers and about 2% get stomach cancer. The reason that only a minority of infected people get stomach cancer has something to do with their genes, the genes of their specific strain of H. pylori, and perhaps, dietary factors like, eating too few fruits and vegetables. Smoking and drinking alcohol make the disease more likely, too. I had an aunt who died of stomach cancer. My brother was infected with H. pylori but had it eradicated with antibiotics 20 years ago and did not get stomach cancer. (Unfortunately, we are not identical twins. If we were, this would be a better scientific study.)
My main “causes” now are:
1) Educating doctors and patients about helicobacter and stomach cancer. Although stomach cancer is one of the three leading causes of cancer deaths worldwide, it is relatively uncommon in the US, so doctors here do not think about it. Helicobacter was not discovered until 1984, so doctors my age tend to be only vaguely aware of it, mostly in relation to peptic ulcers. I am Founder of the Eastern Michigan Chapter of DDF and a Mentor with the DDF PREP Program, too.
2) Working for “oral chemotherapy parity.” Currently patients in many states must pay a lot more out of pocket for oral chemo drugs that they do for infused drugs. This keeps many people from getting the most safe and effective treatments.
3) Expanding access to medical marijuana (Ohio just became the 26th state to legalize it.)
4) Making drugs available sooner for patients with relatively rare diseases. Why did it take 13 years from the time that Herceptin was approved for breast cancer before it was approved for stomach cancer?
5) Getting more funding for stomach cancer research.
For all of these causes (except) medical marijuana, Debbie’s Dream Foundation: Curing Stomach Cancer has allowed me to be more effective. DDF has made it possible for me to work with the Food and Drug Administration (FDA), with the Oral Chemotherapy Coalition, the National Comprehensive Cancer Center Network (NCCN), and with the DDF Congressional education efforts.
DDF has also given me a community of people who have been a great source of comfort to me during my darkest days. Another source of comfort has been the Facebook group “Stomach Cancer Warriors and Caregiver Family,” which now has over 3000 members from all over the world.
I have a more or less monthly blog for the American Society for Clinical Oncology (ASCO) where I get to share some of what I have learned from my illness so far. You can visit my posts at this link. https://connection.asco.org/authors/James%20Randolph%20Hillard,%20MD
“Dreaming Big” with DDF has made me feel that I can fight back against this disease and also help others who are fighting it.