CONTEST WITH CANCER
One couple’s struggle from diagnosis to cure
A gruelling, inspiring, terrifying year in the life of a husband and wife facing the most serious form of skin cancer.
MY HUSBAND GORDON WALKED IN the door, his blue eyes serious. It was a drizzly, cold afternoon on March 1, 2012. He closed the door behind him and gestured with a couple of sheets of paper. “Here’s the pathology report.” He paused. “It’s melanoma.”
Melanoma. The most serious kind of skin cancer. I started to feel cold, and a tight knot formed in my stomach. Gordon put his arms around me and we stood together silently, trying to collect ourselves.
Beside us was a wall of photographs. Our daughter, Talia, at age two, was smiling, shyly. Her brother, Tom, at about eight, laughing with delight as he jumped off a diving board into a pool near an ocean beach in Vancouver, Canada. And there was Gordon, carrying a parachute and grinning, after his one and only sky dive. I looked at the pictures, as I did almost every day. What’s going to happen to us now?
“So the dermatologist was wrong,” I finally said. “About the lump being squamous cell.”
Gordon shrugged. “People make mistakes.”
“What’s next?” I asked. “The surgeon says I need to come in again. He took out a 1.2 centimetre margin of tissue. But for melanoma the guidelines stipulate 2 centimetres. He has to take more tissue.”
The growth had appeared three months before, in his left arm just above the elbow. It was about the size of a bean, and quite hard.
A few days later I drove him to the hospital where he met the surgeon. In less than ten minutes the doctor was done, and told Gordon to come back on March 1 to get the stitches out and review the biopsy. No big deal, his manner told us.
So, when Gordon arrived home on March 1, waving the report in his hand, I was completely unprepared. How could Gordon have melanoma? Nobody in his family had had melanoma. He worked indoors for most of his life, much of it as the owner of a small software development company. Even on sunny days he never sat outside to get a tan.
This new fact ripped through the fabric of my worldview, leaving me exposed and vulnerable.
E DIDN’T PHONE our kids right away – Tom, 26, and Talia, 24. We wanted to get used to what had happened first. We cooked dinner and shared a bottle of wine. After supper we cleaned up and went to bed. But I awoke suddenly around 2am, and sat up: Gordon has melanoma. I slipped out of bed and padded down the hall to our office.
While my computer was booting up, I gazed at a small picture in a wooden frame. Gordon (now age 64) and me (now 63) two years after we were married in 1971. We were staying at his mother’s cottage. I was sitting on the diving board. Gordon was lying down, head on my lap. I looked at the young couple. We’ve loved each other for such a long time, I reflected.
My desk was piled high with folders of information for my current project. I was writing a book about cancers – but cancers caused by infections. Only some cancers are caused by infections and, as far as I knew, melanoma was not one of them. I had no special understanding of this malignancy but I was definitely used to reading medical reports.
I picked up the pathology report. At the top it said, “Positive for invasive malignant melanoma, nodular type.” Invasive and malignant were clearly worrying, but what was the significance of nodular? I consulted Google and learned that the majority of melanomas spread horizontally across the skin, but a few grow vertically, invading the lymphatic system and spreading to other organs. Nodular melanomas account for 15 per cent of cases, but 40 per cent of fatalities. Rapid growth is their hallmark.
We were facing a formidable force. But I believe that information is your
friend, and having a better sense of where we were would help us out. I returned to bed and fell asleep.
I phoned the kids, and they came over to spend the weekend with us. We played bridge, and went to a contest held by Gordon’s camera club. His outsized picture of our cat won the People’s Choice Award, which buoyed our spirits. On Monday I set up a date at the outpatient clinic for Gordon’s second excision.
New Tumours Are Found
We went back to our GP, Dr Scott, to discuss our options, and he referred us to an oncologist. I also contacted an organisation dedicated to supporting skin-cancer patients, Save Your Skin. I emailed the founder, Kathy Barnard, a melanoma survivor, and she replied immediately.
Gordon and I met Kathy in a café, and she told us how she had defeated the disease though surgery and then immunotherapy, a newer approach to cancer that uses a person’s natural immune system to fight the disease. It was a trial immunotherapy called ipilimumab that she credits with saving her life. She is one of the first Canadians to ever survive metastatic melanoma.
When we met the oncologist we discussed our options, including the possibility of immunotherapy. The doctor told us that interferon was available, but ipilimumab was still experimental and therefore not funded by the BC Cancer Agency – which coordinates cancer care with the health authorities.
We went home feeling anxious. How could Kathy Barnard qualify for ipilimumab, but not Gordon? The next morning at breakfast Gordon seemed especially upset. “Is something wrong?” I asked.
He looked at me intently. “Last night,” he said, “while we were in bed. I noticed this lump under the skin.” He rolled up his sleeve, and I could see it wasn’t far from the site of the original melanoma.
The by-now-familiar reactions fired up: racing heart, knotted stomach, a shivery cold feeling. “I think you need a biopsy,” I finally said. “Yeah, I’ll call.” I didn’t have to press. Even Gordon was shaken by this development.
On April 4, Gordon had the new lump removed. It was a swollen lymph
WE FACED A FORMIDABLE FORCE. BUT I BELIEVE INFORMATION IS YOUR FRIEND. HAVING A BETTER SENSE OF WHERE WE WERE WOULD HELP
node. The doctor told us it could be a reaction to a disturbance in the area from the initial surgery, or it could be another melanoma. The odds were fifty-fifty.
I HAD ALWAYS BELIEVED Gordon and I were likely to live together for many years. But the road on which we were walking seemed to be getting shorter. I was drawn to thinking about our past.
Gordon and I went to the same high school and he always says he first noticed me in Grade 9 because of a crocheted jumper that my grandmother made for me. It had a way of slipping off my shoulder that he liked. We became friends in Grade 12 and stayed friends when we both entered the University of British Columbia in Vancouver. We used to rail about the evils of materialism while having lunch together; we still do occasionally and laugh. Some things never change.
THE REPORT CAME on Friday, April 13. The new lump was positive for melanoma. Because of that, his doctor was ordering a PET scan to see whether the disease had spread any further.
On April 20, he phoned Gordon. A lymph node under Gordon’s arm had a tumour. The cancer seemed unstoppable. Our emotions swung this way and that, from one day to the next, even from one hour to the next. Often we were not in unison: Gordon feels fine, is cheerful. Says the future is overrated. I, on the other hand, am hardly ever that light-hearted. We have conversations:
“I wish we weren’t going through this. Life would be so much nicer if we weren’t,” I said. “Life is fine.” “I’m afraid of losing you!” “I’m still here!”
On May 2, Gordon had the node containing the tumour, along with a number of surrounding nodes, surgically removed.
Going on the Offensive
Removing melanoma surgically has been a mainstay of treatment since the early 1900s, but it is a crude instrument. Stray malignant cells can easily escape the surgeon’s knife and cause a relapse. So far, we had been playing catch-up as one lump was removed and then another popped up.
I HAD BELIEVED GORDON AND I WERE TO LIVE TOGETHER FOR MANY YEARS. BUT OUR ROAD SEEMED TO BE GETTING SHORTER
We were still interested in one of the newer immunotherapies, but because the first oncologist we saw did not seem to think we could get it, we asked our family doctor for another referral. Later in May Dr Scott sent us to Dr Sasha Smiljanic, who accessed the report on Gordon’s surgery.
The good news was that only one lymph node contained a tumour. Some of the others were enlarged, but not infected. The cancer was large, four centimetres in length. Therefore, radiation under Gordon’s arm might be in order. Cancer cells are especially vulnerable to radiation because they are actively dividing. The therapy has been used for over a hundred years. But Gordon also asked about immunotherapy.
Dr Smiljanic mentioned ipilimumab, but cautioned that researchers didn’t have much information about this kind of new therapy. “In five years we’ll know more,” he said. “But you can’t wait that long.”
He wrote to Dr Scott, to keep him abreast of what was happening, saying Gordon was going for radiation while he worked on something more innovative. He also mentioned a report from Stanford University showing that radiation and ipilimumab together appeared to be synergistic. Radiation increased the effect of the drug, producing better results.
The BC Cancer Agency had still not decided to fund ipilimumab, so Dr Smiljanic applied directly to its developer, Bristol-Myers Squibb, to ask for the drug on compassionate grounds. I realised that even if Gordon received the new therapy, he might not respond. This would be a voyage into the unknown.
On July 16, Gordon drove to the BC Cancer Agency and started his regimen of radiation, delivered in 20 daily doses over a period of four weeks.
Meanwhile, Dr Smiljanic told us Gordon needed to meet Health
Canada guidelines about taking ipilimumab as a second line of defence, which meant that after completing radiation he would have to undergo chemotherapy. We didn’t understand why he was required to have the chemo. The treatment picked for him, dacarbazine, achieves a complete remission in just five per cent of melanoma patients and a mere quarter of those stay cancer-free. But we had to follow the rules.
So on August 21, Gordon drove over to Lions Gate Hospital and reported to the chemotherapy department. He signed in, lay down on a recliner, and a nurse hooked him up to a bag containing a pale yellow liquid. After the bag emptied, she detached him from the machine and Gordon returned home with a handful of medications to ameliorate any side effects of the therapy.
The Waiting Game
A week later Bristol- Myers Squibb called: Gordon was approved for ipilimumab! But we had to wait four weeks for the infusion of chemotherapy to wash out of his system. Finally, on September 19, Gordon made his way over to the hospital again. By now he knew the drill. Sign in, find a recliner, wait for the nurses. He was given a bag of saline solution, then the ipilimumab, and then more saline to make sure every last drop of the expensive prescription was flushed out of the tube and into his vein.
In October he got his second and third infusions of ipilimumab, and experienced minimal side effects. This concerned me because I had read that patients who experienced significant adverse events were less likely to relapse. Normally, one would not welcome digestive upsets or rashes, but they would indicate Gordon was on the right track. He had his fourth and last infusion of ipilimumab in November, and then all we could do was wait – wait for new CT scans to see whether he was one of the lucky ones – one of the ‘responders’.
In the beginning of April 2013, Gordon and I sat in two chairs in the examination room at Lions Gate Hospital as Dr Smiljanic gave us the news: Gordon’s lungs, liver and bones were all clear, but the CT scan showed two worrisome centimetre-size spots, one on his buttock and the other on the outside wall of his colon.
We were back in the thick of things, back to distressing lumps of unknown provenance. The ipilimumab wasn’t working.
Gordon was scheduled for a PET scan, which would show whether the cancer had spread any further.
Staring at the Brink
On May 21, Gordon and I again sat in the cramped office of radiologist Dr Charmaine Kim-Sing. She was shaking her head. Results from the latest PET scan were not good. “As well as the tumour in the buttock that you already know about, there are smaller
ones in the right chest wall, the left chest wall, and the upper abdomen. There’s also one near the colon and one in the mesentery. Six altogether.” She explained that the mesentery is the tissue that attaches the intestines to the abdominal wall.
“The good news is that the melanoma is not in any of the major organs. If melanoma goes to the brain, you have four to six months; if it goes to the liver or lungs, nine to twelve,” Dr Kim-Sing told us. “What’s next?” Gordon asked. “There are too many tumours to treat with radiation. You need a systemic treatment.” “You mean ipilimumab?” I asked. “Something like that.” “Gordon already had it and it didn’t work,” I told her. “Have you seen people who responded to a second round, when they didn’t respond to the first?”
Dr Kim-Sing nodded. “Yes, I have. You have to hope for the best and prepare for the worst.”
The next day I was formulating a plan. I’d heard about a different drug, lambrolizumab ( MK-3475), an immunotherapy like ipilimumab, but this version released a different brake on the body’s T cells: PD-1.* It was sometimes called an anti-PD-1 therapy. In a preliminary study, lambrolizumab helped around 35 per cent of patients, whereas its cousin ipilimumab, just 10 to 20 per cent. Lambrolizumab was not yet approved in either the US or Canada, but perhaps Gordon could enrol in a clinical trial.
We met Dr Smiljanic again. He wasn’t as enthusiastic about lambrolizumab as we were, and preferred a similar drug called nivolumab. A study was going on at the Cross Cancer Institute in Edmonton, Alberta.
Dr Smiljanic gave us a referral, but when Gordon called he was told his eligibility was doubtful.
I probed Google and found other institutions offering trials. I called half a dozen cancer centres in the US, and found a possibility at The Angeles Clinic in Santa Monica, California.
THE SCAN SHOWED TWO NEW SPOTS. WE WERE BACK IN THE THICK OF THINGS, TO DISTRESSING LUMPS OF UNKNOWN PROVENANCE
Gordon flew down in June and met the chief investigator on the trial, Dr Omid Hamid. The doctor examined Gordon and said he might qualify. But first he had to have some tests.
Gordon had blood tests and reported for an MRI. Then Dr Hamid appeared and led Gordon to a room where a group of people was reviewing his tests. Someone had drawn a green box around a small area of the scan of Gordon’s cerebral cortex. The MRI had found a tumour in his brain. That disqualified him for the study.
“You need to fly home, have that surgically removed and get some radiation,” the doctor told him. “Then come back here and we’ll get you into a trial.”
When Gordon called me and relayed the news, I was devastated. We had come so close, and now we were staring at the brink again.
WENT TO THE AIRPORT to meet him. His plane had already landed, and I didn’t have to wait long before I saw him striding through the door to the lounge. We hugged and I kissed him. He smiled and we walked out, hand in hand. The situation wasn’t good, but at least we were together.
Gordon emailed Dr Smiljanic, telling him about the tumour, and asking about surgery, radiation and the possibility of another anti-PD-1 drug trial. What were his chances? he asked. And he wondered if maybe, instead, his goal should be to use the time remaining to him well, rather than pursue heroic interventions with impossible odds.
In reply to Gordon’s email, Dr Smiljanic strongly encouraged us to move ahead with the surgery. Gordon and I weighed the pros and cons of surgery. If he did nothing his condition would deteriorate. If he had the brain tumour removed he might improve significantly. We decided we couldn’t give up just yet, and resolved to go on, convinced that yet another surgery was worthwhile.
On the eve of surgery, we went on a romantic date to a small restaurant. We pledged not to talk about anything
metastatic. I looked into Gordon’s dark blue eyes, warm and friendly. He told me he was happy and that he felt bathed in love. Actually he told me this quite often.
The next day, at Lions Gate Hospital, Gordon was to have a craniotomy – a piece of his skull would be removed, the surgeon would peel back some blood vessels and extract the malignancy. Then he’d put back the piece of skull.
After I dropped Gordon off at the hospital, I went home and met the kids. They were going to keep me company so I wouldn’t go stir crazy. We had lunch, played cards, then returned to the hospital. Gordon was awake. His head was wrapped in gauze and he looked like a wounded soldier, but he felt not bad. Everything had gone well.
Two days later I got instructions on how to change the dressing, and I went home with my husband, who now had staples in his head making him look like Frankenstein’s monster.
Mapping the Way Forward
Gordon saw his recovery as hiking over a series of hills without any maps. The terrain was challenging, but he was committed. Turning back was not an option, but whether or not he would reach his final destination was in doubt.
The first hill was the surgical removal of his brain tumour. He was over that hump. The second hill was the radiation therapy to avert another melanoma in the brain. This hill was still shrouded in mist. The third hill was getting into a clinical trial of an anti-PD-1 immunotherapy drug. This goal was way off in the distance – blue and shimmering. He had no idea how he would get to the top. He could only hope that once he got nearer, the way might seem obvious.
Gordon, his head still wrapped in a gauze turban, was lying in a hammock in our living room, next to the front windows. I was sitting on the sofa, and a stack of papers lay on the coffee table between us. We were deep in radiation studies, planning our second ascent. We read studies and reviewed trials. We found the Swedish Medical Center in Seattle, Washington, that offered the procedure by Gamma Knife, a device that directed radiation only at the part of the brain from which a tumour was
GORDON SAW HIS RECOVERY AS HIKING OVER A SERIES OF HILLS WITHOUT ANY MAPS. THE TERRAIN WAS CHALLENGING, BUT HE WAS COMMITTED
removed – where recurrence was most likely. So with Dr Smiljanic’s blessing we drove to Seattle.
On July 11 Gordon was given Ativan (lorazepam) and lidocaine to manage the pain, then a metal frame was screwed into four points of his skull, two on his forehead and two at the back of his head. He got a quick CT scan to locate the target, and then a helmet with hundreds of holes in it was placed over the frame to further direct the gamma rays to the coordinates.
The whole procedure took about four hours. And when it was done the team took a picture of Gordon. He labelled the shot, “Me trying to smile with a metal frame screwed to my head.”
We drove home to Canada later that same day, and Gordon insisted he was well enough to attend a meeting of his photo club. The second hill was not as arduous as we expected.
For several weeks, I Googled and made calls about immunotherapy trials. The slot that had slipped through our fingers in Santa Monica was the last one Dr Hamid had available; spots elsewhere would be scarce as well.
While Gordon’s doctors supported his decision to seek out a trial, they did not actually locate one for him. We were on our own in that pursuit. The last place I tried was South Texas Accelerated Research Therapeutics ( START) in San Antonio. I’d never heard of it, but when I asked the patient referral coordinator if they had a study that was still recruiting, she said, “Yes, we have one for MK-3475.” This was Merck’s other, less evocative, name for lambrolizumab.
Then she told me, “We have two slots left.” Merck would pay for the drug, but we would be responsible for scans, blood tests, and consultations with the doctor.
Two slots! We have to get cracking. I gave the coordinator a brief history of Gordon’s situation, and she said he sounded like a fit. “Can I fax you Gordon’s medical records?”
“That would be a good idea. The study coordinator will look at them and determine whether your husband is eligible.” “How long will it take?” “A few days. You will hear back next week.”
I hung up the phone. Gordon looked at me expectantly. “I can’t believe it,
ONLY ABOUT A THIRD OF PATIENTS WOULD RESPOND TO THE MEDICINE. ALL WE COULD DO WAS WATCH THE SCANS
Gordon. I think we might have it– San Antonio, of all places! But there are only two places left. We’d better get your records off.”
We quickly assembled the scan reports, blood tests and doctor letters and fed the sheets through our aged fax machine.
In the meant ime, Gordon needed another MRI. He couldn’t have another brain tumour, or the trial was off.
Dr Smiljanic sent a requisition to the MRI clinic, and Gordon went over on a glorious July morning and had his scan. Three days later I found a letter from the MRI folks in our letterbox. I handed Gordon the envelope. I could not bear to look at it. We sat down on the sofa, my head buried in Gordon’s chest, a coping strategy I used to get through the scary bits in movies. I feared a repeat of what had happened in Santa Monica – Gordon being accepted into a trial and then rejected at the last minute due to another brain metastasis.
As Gordon read aloud, I could hardly comprehend what I heard, but grasped the upshot: all OK. Gordon faxed the report to San Antonio, and I sighed with relief.
ON AUGUST 4 Gordon departed for San Antonio for a day of tests and appointments. He met the director of clinical research, Dr Tony Tolcher,
who turned out to be a transplanted Canadian. When Gordon arrived at START, lambrolizumab had been the subject of several scientific journal articles and was developing a name for itself as a ‘miracle’ cure.
But Dr Tolcher told Gordon that he didn’t overpromise anybody, and that although the medicine had potential, only about a third of patients would respond. He couldn’t predict who would benefit. All he could do was