BehindTheMedspeak: 'Beating Back Cancer... Again'

Laura Landro (above) is assistant managing editor of the Wall Street Journal.

In 1991 she was diagnosed with chronic myelogenous leukemia and underwent a bone-marrow transplant (from her brother) which saved her life.

She thought she was cured... until the cancer came back in 2002.

She wrote an eloquent, beautiful essay about how it feels when that happens; it appeared in Monday's Wall Street Journal.

It is so good that it needs no more introduction.
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Beating Back Cancer... Again

Ten years without leukemia meant everything was supposed to be OK. It wasn't.

On July 22, 2002, 10 years to the day after receiving a bone-marrow transplant that saved me from a deadly form of leukemia, I threw a victory party for family and friends who had been there during the long fight.

A decade was a big milestone: I was now supposed to be officially cured.

It turned out to be something of a "Dewey Defeats Truman" moment.

A few weeks later, I learned that I was in the early stages of a relapse.

The cancer was coming back.

Was it a big surprise?

Not entirely.

Even though I had been given a clean bill of health every year for nine years, the annual tests performed to monitor me would periodically come back with an ominous mention of what doctors called "minimal residual disease": small traces of the leukemia cells that weren't really doing anything - but weren't going away, either.

My doctors told me my new immune system, created by bone marrow from my brother Chris, appeared strong enough to keep it in check.

But in my gut, I had a feeling I was going to have to face this opponent again, someday.

As almost anyone who has survived cancer knows too well, you are never really sure that you are out of the woods.

Even in cancers with the most-effective treatments and the best long-term survival statistics, the possibility of a recurrence is always there - as is the danger of new cancers caused by highly toxic chemotherapy drugs and radiation used in the original treatments.

The good news is that there are more weapons at our disposal than ever before.

Researchers have made huge strides with drugs like Gleevec, Iressa and Evista, new "targeted" therapies that inhibit the growth of cancer cells while leaving healthy cells intact.

And oncologists are finding novel strategies to harness the human immune system to fight cancer as well.

The bad news is that cancer cells are already outwitting some of the newer drugs, and treatments that seemed to be miracle cures aren't always working.

Some cancers continue to elude breakthroughs, and others are so fast-growing they simply can't be stopped.

This year, 1.4 million new cancer cases will be diagnosed, and 1,500 people daily will die of the disease in the U.S.

Despite having access to the newest treatments and the best doctors, several of my friends and colleagues have lost their battles against cancers in just the past year alone.

But I've also seen many friends and family triumph over breast cancer, prostate cancer, colon cancer, melanoma and Ewing's sarcoma.

There are now more than 9.8 million cancer survivors in the U.S., a number expected to rise as the population ages and new therapies emerge from clinical trials.

Close to two-thirds of people diagnosed with cancer now live at least five years, up from a five-year survival rate of 50% in the mid-1970s, according to the federal Centers for Disease Control and Prevention.

By 2010, the goal is to increase to 70% the proportion of cancer survivors living five years or longer after diagnosis.

Some cancers are now being treated as chronic diseases that have to be managed, like heart disease and diabetes, with daily medications, lifestyle modifications and constant vigilance.

Thanks to the wealth of information online, it has never been easier for cancer patients to keep abreast of new treatments and get involved in research studies when conventional therapies fail or the cancer recurs.

The Web has enabled cancer patients to connect with each other as never before, providing much-needed support and inside information.

Cancer survivorship has become enough of a public-health issue to rate a national action plan: The CDC called for one in July to help survivors and their families and caregivers deal with the many physical, psychological, social, spiritual and financial issues throughout their diagnosis and treatment, and for the remaining years of their lives.

I was fortunate to emerge from my bone-marrow transplant with relatively few of the long-term complications of the procedure, which can include debilitating side effects, poor general health and depression.

But it is impossible to emerge unscathed: I lost my fertility, my immunity to some diseases, my ability to digest some of my favorite foods, and some short-term memory and cognitive function -- though sometimes I use that as an excuse for being a scatterbrain.

In the 10 years after my treatment, my life was better than I ever dreamed it could be: I met and married my wonderful husband, while my four grown stepchildren, six step-grandchildren and two beautiful nieces have given me some of the joy I missed in having my own children.

But living with cancer has left me unable to project very far into the future or to presume that I will be there when they grow up.

Still, I've come to think of myself as lucky - lucky to be alive at all, and lucky to have one of those cancers, chronic myelogenous leukemia, which researchers have made steady progress in conquering.

Not so long ago, CML was a death sentence.

In the early 1970s, scientists at the Fred Hutchinson Cancer Research Center in Seattle made the first breakthrough with bone-marrow transplants, using high-dose chemotherapy and radiation followed by an infusion of donated cells to kill off any remaining bad cells and build a new cancer-free immune system.

If the disease recurred, second transplants were possible -- but much riskier and often fatal.

By about 1990, doctors perfected a rescue technique known as donor leukocyte infusion, or DLI - literally, a booster shot of cells from the transplant patient's original donor, to reactivate the immune response that knocked the cancer out in the first place.

Doctors also had success treating CML with other drugs, including interferon, but by the 1990s, Brian Druker, a researcher at Oregon Health Sciences University, working with the drug company Novartis AG, began developing the drug Gleevec, a breakthrough that blocked the molecular cause of CML.

That meant patients with no match for a transplant or those who didn't wish to undergo a risky, painful bone-marrow transplant and spend months in isolation in the hospital could simply take a pill.

Today, the accepted first-line treatment for many CML patients is a daily dose of Gleevec.

And while about 10% of 15% of patients become resistant to the drug, researchers are already in trials with a new compound to get around that problem for some of them.

Of course, with the science of cancer treatment moving at a rapid clip, patients often have to gamble on new therapies.

In my second bout with CML, I was offered a treatment plan combining two therapies - DLI and Gleevec - which sounded reasonable, but for which there was no real long-term data.

By contrast, when I was first diagnosed in 1991, there was clear evidence that a transplant was the only hope for a cure.

I was fortunate to have two brothers with the identical tissue types necessary, and there was hard data about various transplant regimens to help choose the best treatment plan.

After investigating several centers, I chose the Fred Hutchinson Center, which had won a Nobel Prize for pioneering the treatment.

Nicknamed "The Hutch," it had not only the most impressive long-term survival statistics, but it was staffed by medical professionals whom I liked and trusted - something of inestimable value when you are about to put your life in someone's hands.

After three harrowing and painful months in the hospital and two as an outpatient, the transplant was considered a success, and I returned annually to Seattle for follow-ups with my doctor, Rainer Storb.

My own experience launched me into what would become a whole new phase of my journalism career, writing about health care and the issues consumers face in making informed decisions as patients.

I made it a point to keep abreast of new developments, reading medical papers from the annual American Society of Hematologists meeting and looking for anything I could find online about relapse and new treatments.

I always wanted to understand the complex events happening to my body; it helped me to visualize the cancer and psyche myself up to fight its return.

The aim of a transplant is to eventually have all the donor's cells take over and stay in control for good.

In transplant lingo, I was a "mixed chimera": My immune system was a mix between my own remaining blood cells and cells made by marrow from my brother Chris.

I knew the term chimera from mythology: a fire-breathing creature with the head of a lion, the body of a goat and the tail of a serpent.

Because Chris was a U.S. Marine, we called his cells the Mighty Marine Marrow; on occasion I would pick up his beautiful ceremonial sword and picture myself slashing away at the leukemia creature.

In the years after my transplant, the tests to detect residual or recurring disease were becoming ever more sophisticated.

In my annual checkups, doctors or nurses would pull marrow out of my lower back with a giant corkscrew-like needle, and then looked at just 20 or 30 cells.

If the cells were all male, that was good news.

But newer tests could check on millions of cells at a time, and doctors were beginning to believe that CML could recur if even a few bad cells remained in the body.

In CML, an abnormality called the Philadelphia chromosome creates a hybrid gene called BCR-ABL, and it causes white blood cells to grow uncontrollably, eventually killing the patient.

About five years after my transplant, the minimal residual disease, as they called it, was making a pretty regular appearance in the tests as copies of the BCR/ABL gene.

By July 2001, the number of copies began to multiply, and we began to talk about an infusion of new cells, the booster procedure known as DLI, from my brother Chris.

That conversation took on new urgency after September 11, 2001, when the World Trade Center across the street from my office was destroyed and the country began to make plans to invade Afghanistan.

Chris, a Gulf War veteran, was still a reserve officer in the Marines, and as reserve units around the country began to be activated, I started to worry that he would be called up to active duty.

After discussing our options with Dr. Storb, he suggested we collect and freeze some cells from Chris, just in case.

In early October, we boarded a plane to Seattle, where Chris was hooked up to a giant centrifuge for a process known as leukapharesis.

Over four hours, it pumped his entire blood supply out of his body through his right arm, collected leukocytes - the white blood cells which fight off infections and are responsible for immune function - and ran his blood back into his left arm.

The collected leukocytes were then frozen, to be thawed and available to me if I crossed over into full-blown relapse and Chris was overseas and unavailable to donate fresh cells.

For now, though, we were still in a watchful waiting phase.

It wouldn't do to jump the gun and get the new cells if I wasn't in technically in relapse.

There was still a chance the residual cells would go away, and even if not, any recurrence would likely be a slow evolution rather than a sudden crisis.

Moreover, we didn't want an infusion of new cells unless absolutely necessary.

Like the original bone-marrow transplant, a donor infusion carried a risk of the potentially dangerous complication called graft-vs.-host disease, in which the donor cells, known as the graft, recognized my body, or the host, as a foreign place and triggered a nasty, and possibly deadly fight.

We went back home and tried to get back to normal.

That was hardly easy; in December, just as I had feared, Chris's reserve unit was called up by the Marine Corps, and he was sent to Camp Lejeune in North Carolina for training.

We were too busy coping with the fear and anxiety after the terrorist attacks on New York and worrying about whether Chris would be sent overseas to think much about anything else.

In February 2002 I seemed to get a reprieve: The tests showed that the number of leukemia cells had plunged dramatically.

Dr. Storb remained optimistic that I might not be heading into a relapse, but suggested more frequent monitoring through the most sensitive testing procedures.

Perhaps, I thought, my minimal residual disease was just a bunch of flotsam and jetsam after all.

By August 2002, however, it was clear that was not the case.

Tests showed more than 2,100 copies of the bad cells, up from just 79 a few months earlier; between 3% and 4% of my cells were cancerous, and the Philadelphia chromosome was back in evidence, meaning the disease was progressing.

Breaking the news to me on the phone, Dr. Storb said the transplant team had reviewed the case and come up with a new idea for a treatment plan that was a little different than what we had discussed before.

By then, the new drug Gleevec was well out of clinical trials and was becoming the standard treatment for newly diagnosed CML.

Since the number of leukemia cells was still relatively low, the doctors were proposing a two-step treatment - a three-month course of Gleevec, followed by the DLI using my brother's cells.

The way I understood it, we would use the Gleevec like the first wave of infantry to knock down as many cancer cells as possible, and then bring in those tough Marine donor cells from my brother to obliterate whatever was left.

DLI appears to work by sending original donor leukocytes into the bloodstream, where they again recognize the patient's leukemia cells as "foreign."

That in turn appears to kick-start the same immune response - known as graft-vs.-leukemia effect - that worked in the original transplant.

Or as Dr. Storb explained it to me, Chris's original cells had gotten a little complacent in there over time, and had let some vagrant leukemia cells slip past their defenses.

The new cells would act as reinforcements, stamping out the insurgency.

There was plenty of evidence that DLI worked: In one study of CML patients who relapsed following transplantation, two-thirds had gone back into remission after DLI and 95% of them were alive three years later.

But there weren't any studies and no real evidence that combining Gleevec and DLI would work over time, because it was too new an idea.

It made sense: Clean up as many cancer cells as possible with the drug so the donor cells would have less work to do and we wouldn't need such a high dose of Chris's cells, which might trigger a bad reaction.

Though I had relied almost entirely on statistical evidence in the past to make my decisions, I would have to trust my doctors' instincts that this was a good route to take.

I remember waiting at the kitchen table for my husband, Rick, to come in the door so I could break the news that it really was a relapse this time.

I meant to be calm and optimistic.

But then I saw his face.

We had met and married four years after my transplant, and though he knew everything there was to know about my situation and had adopted my health as his personal crusade, I had hoped to spare both of us the experience of facing this cancer again.

Still, there was no one stronger, more loving or more resolute to have by my side now.

As I called my parents and my brothers to let them know, I felt a strange sense of déjà vu - nothing had been as hard as the day in October 1991 when I first had to tell my parents that I had cancer at the age of 37.

Now, while we had all been hoping for a different outcome, we were all veterans of the cancer wars.

My father had been diagnosed with prostate cancer in 1998 and responded well to treatment, my aunts had survived breast cancer, and a brother-in-law had survived colon cancer.

And everyone was able to take heart from my assurances that the prognosis was excellent, and the treatment would be a cakewalk compared to the torment that had taken over our lives 10 years before.

At that point, I had to make a difficult decision.

Taking Gleevec, I would have to be monitored closely, and all the doctors agreed it would be best to obtain fresh cells from my brother rather than use the ones we had frozen the previous fall.

The idea of commuting back and forth to Seattle while I was working full time was hard enough, but getting my brother back and forth a couple more times from Camp Lejeune to Seattle was more hardship on him than I wanted to impose.

I decided to look for a cancer center on the East Coast that would be fast and easy for both of us to get to, and that had experience with relapse and donor leukocyte infusions.

In reporting a story about a group of patients using the drug Gleevec to treat another form of cancer known as gastrointestinal stromal tumor, I had met their doctor, George Demetri, at Dana Farber Cancer Center in Boston, so I called and asked if he could recommend anyone there.

He put me in touch with a bright young doctor named Ted Alyea, who had done extensive work and research on DLI.

We flew up to Boston in late August to meet with Dr. Alyea, whom I liked immediately.

He was happy to work with Dr. Storb in Seattle to coordinate my treatment, and the two conferred about the best course to take - including the duration and dose of my Gleevec regimen and just how many of my brother's cells to give me to trigger the anti-leukemia effect without the graft-vs.-host complications.

Dr. Alyea was doing some experimental work with manipulating the T-cells in the marrow of DLI treatments and asked me if I was interested in entering a clinical trial.

But he didn't push the issue, and given the fact that I was feeling a little out on a limb already, I decided to pass.

I started the Gleevec in August of 2002.

Although most people find the drug tolerable, it has a few unpleasant side effects, like swelling, eye bleeds and puffiness, and fatigue.

I couldn't get some of my fashionable pointy-toed shoes on, and my eyes were perpetually puffy and bloodshot.

Though I tried to exercise, I felt tired a lot of the time.

But I was able to work and go about my life, and most of the anxiety came from worrying about whether my brother would be sent to war and counting down the days until I could stop the drug and undergo the DLI procedure.

Dr. Alyea wrote all the necessary letters to the Marine brass to get the clearances for Chris to make two trips to Boston.

Sure enough, after three months, the Gleevec had done its work; there was just a trace of the leukemia cells.

On December 3, my brother flew to Boston from Camp Lejeune to start the four-hour procedure to collect the cells I needed.

The next morning, Rick and I arrived in time to see him in the last hour of collection, once again hooked up to the centrifuge machine.

The process was a little harder on him this time; his red blood cells were "sticky," we learned, so it was taking longer to get the white cells.

I felt terrible, like the family vampire, always needing new blood products.

He was cold and depleted of calcium during the process, so they gave him a blanket and Tums, and then took the cells away to be processed further overnight.

He was barely able to make it to dinner afterward, and after a night's sleep at our hotel, he was back on a plane to the base the next morning.

Rick and I, meanwhile, returned to the hospital so I could be infused with the collected cells.

I was in a huge room, full of patients getting infusions of various things, when Dr. Alyea came by with the tiny bag of cells, and turned on my pump.

Within a matter of minutes, the infusion of my brother's cells was complete.

For the next year, we watched and waited.

My brother, thankfully, returned from active duty.

Every few months, I had to undergo a painful bone-marrow biopsy: Although some local anesthesia and a mild sedative took the edge off, it felt as if a corkscrew was being slowly twisted into my lower back pelvic bone and then wriggled around a few times for good measure.

To take my mind off it while it was happening, my husband and I would do things like invent trivia quizzes for our favorite cult movie, "The Big Lebowski."

At first there were still signs of disease, and Dr. Alyea explained that the DLI might take a while to kick in.

We were elated when we finally got a negative result in August 2003, but worried again when a test came back "inconclusive" in February 2004.

This past July, we had a vacation planned out West, so we decided to have the next test in Seattle.

I had a long talk with Dr. Storb and met with Mary Flowers, a transplant doctor who had also cared for me over the years.

Like Dr. Alyea in Boston, both were confident that I would get a good result this time.

"There are so many things we can do now for the CML," she said, chiding me gently for not minding some other important health issues.

She had a point; I had been so focused on the relapse that I hadn't had the mammogram she had recommended, let alone a Pap smear, eye exam, or dental checkup.

One lesson I've learned is that fighting cancer can make you so focused on the disease that you let everything else slide.

Being cancer-free doesn't mean you can stop taking care of the rest of yourself.

Back home, I waited to hear the results.

In the past, Dr. Storb or Dr. Alyea would send an e-mail or leave a message asking me to call to discuss my results; my heart was always in my throat until I was able to reach them.

This time, Dr. Storb put the good news in the e-mail: All the tests were negative.

I was in "complete remission."

I was also just a few weeks away from turning 50, and it was the best birthday present I could possibly have.

The next best was being able to share the news with my husband, my family and friends.

When I blew out the candles on my cake at that birthday party, my wish was for all of us: that we would just get to live out our lives, in good health and happiness.

Over all these years, I've come to see myself as a member of a very exclusive club.

It isn't one anyone would ever join voluntarily, but membership has its rewards.

As cancer survivors, we are actually able to do something good for others with the lessons we learn and the connections we forge.

We know who the best doctors and hospitals are, and we use our network to help the newly diagnosed talk to the right people and get the right treatment.

We can offer unique insight to help newcomers understand what they're up against, and help them cope with what they have to endure.

And, perhaps most important, we stand here as a beacon of hope, living proof of the answer they most need to hear: Yes, you can beat this.

Where do I go from here?

I know I will have to stay on top of this the rest of my life, but I can live with that - and I don't plan on living my life from test to test.

When I was first diagnosed with cancer so many years ago, I despaired at first that I was clearly a Darwinian failure, with a body programmed to check out halfway through a normal lifespan.

At the time, I invented my own survival-of-the-fittest theory: Survival meant using any means at my disposal, including the latest advances in medicine and technology, to stay alive.

For many years now, I've been surfing a wave of new technology - and I hope to stay right on the edge of that wave.