Con­test With Can­cer

ONE WOMAN’S FIGHT TO SAVE HER HUS­BAND’S LIFE

Reader's Digest International - - Front Page - BY CLAU­DIA CORN­WALL FROM THE BOOK BAT­TLING MELANOMA

MMY 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.”

He shrugged. “Peo­ple make mis­takes.”

“What’s next?” I asked.

“The sur­geon says I need to come in again. He took out a 1.2-cen­time­ter mar­gin of tis­sue. But for melanoma the guide­lines stip­u­late 2 cen­time­ters. 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 mela- noma. He worked in­doors for most of his life, much of it as the owner of a small soft­ware de­vel­op­ment com­pany. We lived in cloudy, rainy Bri­tish Columbia. Even on sunny days he never sat out to get a tan.

This new fact ripped through my fab­ric of my world­view leav­ing me ex­posed and vul­ner­a­ble.

WE 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 2 a.m., 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 mom’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 per­cent of cases, but 40 per­cent 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 Tu­mors Are Dis­cov­ered

We went back to our GP, Dr. Scott, to dis­cuss our op­tions, and he re­ferred us to an on­col­o­gist. I also con­tacted a North Van­cou­ver or­ga­ni­za­tion, Save Your Skin, ded­i­cated to sup­port­ing skin-can­cer pa­tients. 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 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 ex­per­i­men­tal, 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.

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

WE FACED A FOR­MI­DA­BLE FORCE. BUT I BE­LIEVE IN­FOR­MA­TION IS OUR FRIEND. HAV­ING A BET­TER SENSE OF WHERE WE WERE WOULD HELP.

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 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 sweater 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 tu­mor. 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 were 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 tu­mor, along with a num­ber of sur­round­ing nodes, sur­gi­cally re­moved.

I HAD BE­LIEVED GOR­DON AND I WERE TO LIVE TO­GETHER FOR MANY YEARS. BUT OUR

ROAD SEEMED TO BE GET­TING SHORTER.

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.

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, in North Van­cou­ver, who ac­cessed the re­port on Gor­don’s surgery.

The good news was that only one lymph node con­tained a tu­mor. Some of the oth­ers were en­larged, but not in­fected. The can­cer was large, four cen­time­ters 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 re­al­ized 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 de­fense, 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

THE SCAN SHOWED TWO NEW SPOTS. WE WERE BACK IN THE THICK OF THINGS; TO DIS­TRESS­ING LUMPS OF UN­KNOWN PROVE­NANCE.

in just five per­cent 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 cen­time­ter-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 tu­mor 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 tu­mors 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, 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-PD1 ther­apy. In a pre­lim­i­nary study, lam­brolizumab (lam­bro)

WE WALKED OUT OF THE AIR­PORT HAND-IN­HAND. THE SIT­U­A­TION WASN’T GOOD, BUT AT LEAST WE WERE TO­GETHER.

helped around 35 per­cent of pa­tients, whereas its cousin ip­il­i­mumab, just 10 to 20 per­cent. Lam­brolizumab was not ap­proved in ei­ther the United States or Canada, but per­haps Gor­don could en­roll in a clin­i­cal trial.

We met Dr. Smil­janic again. He wasn’t as en­thu­si­as­tic about lam­bro 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 cen­ters in the United States, and found a pos­si­bil­ity at The An­ge­les Clinic in Santa Mon­ica, Cal­i­for­nia. 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 tu­mor 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.

IWENT 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 e-mailed Dr. Smil­janic, telling him about the tu­mor in his

brain, and ask­ing about surgery, and then 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 tu­mor 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] tu­mor. 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 tu­mor was re­moved—where re­cur­rence was most likely. So with Dr. Smil­janic’s bless­ing we drove to Seat­tle.

On July 11 Gor­don was given Ati­van 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 la­beled 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 lam­bro.

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. Gor­don looked at me ex­pec­tantly. “I can’t be­lieve it, 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 mean­time Gor­don needed another MRI. Gor­don couldn’t have an-

other brain tu­mor, 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 mailbox. 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

ONLY ABOUT A THIRD OF PA­TIENTS WOULD RE­SPOND TO THE MEDICINE. ALL WE COULD DO WAS WATCH THE SCANS.

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 okay. 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 who had grown up in West Van­cou­ver. When Gor­don ar­rived at START, lam­bro had been the sub­ject of sev­eral sci­en­tific jour­nals 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 watch the scans and see what they re­vealed.

If he were ad­mit­ted to the study, a scan at 12 weeks would show whether he was head­ing to­ward suc­cess or fail­ure. If the scan at 12 weeks showed no im­prove­ment, Gor­don would likely be taken off the trial. If he re­sponded and the tu­mors shrank, he could stay on the medicine, MK-3475, for up to 11 months. That’s as long as pa­tients could tol­er­ate the drug. Af­ter that, he’d be on his own.

Dr. Tolcher sub­mit­ted Gor­don’s records to the drug com­pany. A week later, it was of­fi­cial. Gor­don was in! First treat­ment on Au­gust 12. We were as­cend­ing the third hill. How­ever, as if to warn us that we still couldn’t rest easy, a new lump emerged on Gor­don’s right arm near his shoul­der.

I felt lucky that we were in a new era of melanoma ther­a­pies. How­ever, I was still acutely aware that the anti-PD-1 drug did not help ev­ery­one. Un­less the pa­tient had T cells that rec­og­nized the tu­mor, the medicine wouldn’t work. Gor­don’s T cell army rec­og­nized mil­lions of dif­fer­ent anti­gens. What were

the odds one of them could de­tect the par­tic­u­lar melanoma mu­ta­tion that he had? We had no way of know­ing.

On Au­gust 12, Gor­don again lay on a re­cliner and read while new an­ti­bod­ies were de­liv­ered into his blood­stream. After­ward, he felt fine – noth­ing re­mark­able, noth­ing to in­di­cate his im­mune sys­tem had been reengi­neered. Once again we were in the game of wait-and-see.

“I Think It’s Work­ing”

A few days af­ter Gor­don got back from San An­to­nio, we were busy pack­ing for a short va­ca­tion. While we were get­ting ready, Gor­don said, “I think it’s work­ing.”

“What? You’ve got to be kid­ding.” “Yes­ter­day I no­ticed the lump on my shoul­der shrink­ing. Se­ri­ously, feel it.” I did so—ten­ta­tively. “Hmm,” I said. “And the pain in my but­tock is less,” Gor­don added.

How could Gor­don see an ef­fect in just a few days?

The next night at our cot­tage in cen­tral Bri­tish Columbia, I lay awake in the small be­d­room. While lis­ten­ing to the loons on the lake call­ing back and forth I warned my­self, Don’t get your hopes up too much. It was a strange thought to have, be­cause for al­most two years, get­ting my hopes up was re­ally what I wanted!

The im­prove­ments con­tin­ued. It was work­ing, and work­ing with­out any real side ef­fects—a few headaches and con­ges­tion, but no pain at the sites of the tu­mors, no swelling, no red­ness.

Gor­don flew to San An­to­nio for his sec­ond treat­ment n Septem­ber 3,. Dr. Tolcher

con­firmed that he was re­spond­ing.

On Novem­ber 4, 2013, the date of Gor­don’s fifth visit to START, he had at­tained the 12-week turn­ing point. The doc­tor read his scan, smiled and con­cluded, “I’m es­ti­mat­ing an 80 per­cent re­sponse rate to the MK-3475.” He ex­plained that his tu­mors were ragged around the edges, as if some­thing was eat­ing away at them. He wasn’t even sure if there was any live can­cer left; he thought they might just be dead cells. The one in his but­tock was com­pletely gone.

I was filled with as­ton­ish­ment – that sev­eral can­cers could qui­etly van­ish.

WHY DID GOR­DON RE­SPOND so rapidly to MK-3475? Did the ra­di­a­tion help things along? No one knows. Per­haps his T cells were quick to rec­og­nize his tu­mors as dan­ger­ous, so when the MK3475 re­leased their brakes, they could eas­ily set upon the melanomas.

The drug com­pany pro­to­col called for another scan at 16 weeks of the drug in­fu­sions. If he was clear, ev­ery­one would feel more com­fort­able about stop­ping treat­ments.

On De­cem­ber 6, Gor­don went to a Van­cou­ver clinic for the scan. We waited. Fi­nally on Fri­day the 13th, the re­port came: “In keep­ing with com­plete meta­bolic re­sponse to ther­apy.” All clear!

So much for an­cient su­per­sti­tions about bad luck on Fri­day the 13th.

We did not pop the cham­pagne corks. We were ex­pe­ri­enc­ing a walk­ing-on-eggshells kind of hap­pi­ness —a bit guarded. But I told my friends that Christ­mas came early that year.

And I got the best present ever. The fu­ture was stretch­ing out a lit­tle fur­ther ahead of us. We did not know what it con­tained, but, for the mo­ment, the idea of hav­ing a fu­ture was enough.

Lam­brolizumab is now called pem­brolizumab or Keytruda. It was ini­tially ap­proved in the U.S., Canada and Europe for the treat­ment of melanoma, but later en­dorsed for small cell lung can­cer as well.

Gor­don lives life to the fullest, in­clud­ing sky­div­ing—once only—in 1982.

A place of refuge: Gor­don and Clau­dia in 1973 at the fam­ily cot­tage at Sheri­dan Lake, in the in­te­rior of the Bri­tish Co­lu­mia, two years af­ter they were mar­ried.

A tree house is not just for kids, Gor­don and Clau­dia find. They like to use theirs, in a back­yard maple, for re­lax­ing to­gether, read­ing or hav­ing a cup of tea.

Newspapers in English

Newspapers from Canada

© PressReader. All rights reserved.