IASLC 2019 World Conference on Lung Cancer

So it gets better. Not only did I travel to Italy this summer, I also attended the 2019 World Conference on Lung Cancer in Barcelona, serving on a group panel addressing ways to improve clinical trials, along with my peer/good friend Janet Freeman Daly.

Janet is a scholar among advocates/activists and she presented compelling data. My territory is the more emotional piece, pulling on years of boots on the ground experience. I had no slides. My speech was written the night prior to our panel. I would imagine there was no presentation even remotely similar at this conference with 7500 attendees.

Of course, I was preaching to the choir as almost half of the people in the room were fellow advocates. Ideally, this message would reach a broader audience (I’m shooting for the plenary session next year). As it was, I received a standing ovation, some tears, quite a few hugs. And requests that I share my speech online, so folks, here it is.

*And no, I’m not a doctor. But I was tickled to be called one.

What would you do to stay alive?

Chances are, almost anything. 

If, as I was, you were diagnosed with lung cancer at the age of 45, you might have most of one lung removed, not by vats, but rather a good old fashioned lower left lobectomy, followed by four rounds of adjuvant chemo—a notoriously nasty doublet of cisplatin and taxotere. 

You would do these things because of your husband, your children, your parents, your siblings. You would do these things because the youngest of your children has not yet turned eight. You would do these things because, at 45, there is so much left undone. And you would do these things because you don’t just like life, you love it.

That desire to live might not diminish even as your cancer returns and metastasizes to your right lung. You might well hang onto hope right up until the moment you ask if it is time to get your affairs in order and the answer is yes—best guess, three to five months in which to do so. 

Dazed acceptance takes the place of desire as you say your goodbyes. And then something quite unexpected happens. You learn that the re-staging biopsy revealed that your cancer is positive for a newly identified oncogenic driver in lung cancer, an EML4-ALK fusion. 

By chance there is a phase I clinical trial for an ALK inhibitor at the very hospital where you receive your treatment. One other person has enrolled but quickly died, in part from side effects from the experimental therapeutic. 

You know that you are also dying. However, on this day you discover that you have not lost hope. The trial is a long shot but maybe, just maybe, it will extend your life by several months. Your greatest anxiety is that your decision to enroll may hasten your death. But you can’t not try, and so you do.

You end up being the 4th person in the world with non small cell lung cancer to take the first ALK inhibitor. 

Eleven years and two more phase 1 trials later, you are still alive. You have lived long enough to see your youngest graduate cum laude from Phillips Exeter Academy. In two weeks, he will enter his fourth year of study at MIT.

In November you will turn 60, and your oldest child 35. None of this was imaginable. None of this would have happened without both the opportunity as well as your personal decision to enroll in clinical trials. 

Your life is full and you feel abundant gratitude in regard to your good fortune. You are aware that for many, your continuing survival is a miracle.

However, you know differently. This was no miracle. It was a combination of medical science and much blood, sweat and tears. 

I succinctly describe my clinical trial experience this way: it has been my privilege and my burden. 

Since October 1 of 2008, I have spent more than a decade as a participant in clinical trials. First in human, early cohorts, all of them. Each time I’ve had approximately a 70% resolution of my cancer and all told, six years of stability. My quality of life has  been, for the most part, extraordinary. However, that is not to say there have been no side effects. Most have been manageable, but some have been extreme, from liver toxicity to cognitive deficits.  I have borne these and not let them get in the way of an incredibly full life. However, the challenges are not to be minimized. 

Every year I max out my deductible in January. Many are under the impression that clinical trials are free—in the trials I have been in, drug has been provided by the sponsor as well as the cost for occasional procedures—for instance, echocardiograms in my current trial. All other medical procedures have been billed to my insurance, which means I am paying the copay. And the non medical expenses—travel, lodging, meals, parking—have all come out of pocket. My pocket. 

Trials are time consuming—consuming in general. My marriage of 24 years ended six years ago—in large part because my then husband found our lives too cancer centric. The financial fallout of divorce has been that my own income is limited—with far too much of it allotted to my medical care.

The emotional burden of the ups and downs of literally living while dying has taken its toll on not just me, but my three children. Uncertainty has a permanent place at our table. 

And then there are the astounding number of scans I’ve undergone—not because they were clinically indicated but rather because they were mandated by the one size fits all protocol of clinical trials. To wit: even though my cancer, invasive mucinous adenocarcinoma, is confined to my lungs, I have now had sixty abdominal CT scans, ten of which were PET. More than one hundred spiral CT scans of my lungs, ten of which were also PET. 42 Brain MRI’s. And sundry x-rays, bone scans, full body PET scans in addition. This in an individual with highly mutable cells. 

Several years ago I requested that the scanning schedule be amended from every six weeks—not standard of care—to every three months. Not just for me but for every participant who had been enrolled for twelve months or longer. And that attention be paid to individual diagnoses. That someone such as myself, with no brain METS, should not be required to undergo such frequent brain MRIs. Keep in mind that in addition to being exposed to unnecessary radiation, I paid copays on those 60 abdominal CT scans and 42 brain MRI’s. 

When my request was ignored by the sponsor, I made the risky decision to become noncompliant, refusing to have anymore abdominal CT scans and also declining injected contrast with MRI’s of my brain, as I was concerned about the possibility of gadolinium retention. Sadly, a year later my MRI was in fact positive for gadolinium—what is referred to as a brain stain, so I now have heavy metal in my cerebellum—a finding with poorly understood consequences. 

Oddly, there has been a push to humanize the role of clinical trial participants, by euphemistically referring to them as partners. As I have written in a blog titled ‘Don’t call me partner’, this is not a partnership of equals, and in fact, is a relationship that at times is abusive. 

That’s right. I am grateful but also angry. Angry because this potentially abusive relationship is codependent. You need me but I need you too. Desperately. 

Therefore, there is nothing to be done but to work on this. 

I would begin by suggesting that there should be some sort of bill of rights or manifesto for participants in clinical trials. A sort of contract that would acknowledge, recognize and even honor the fact that the ultimate purpose of clinical trials involving human beings is not to advance science or to enrich shareholders—it is to address human suffering brought about by disease. 

Recognize that we are not truly volunteers. We didn’t choose this course, we were chosen. A terminal illness is a terrible thing and we all understand that desperate times call for desperate measures. Clinical trials are not some extreme form of community service—we are enrolling because we are hoping that our lives shall be extended. If our contribution helps others, that is a bonus, but do not make us feel that wanting to live should be anything but our primary motivation.

Healthy ‘volunteers’ in clinical trials are almost always compensated for participation. Why? Because they wouldn’t volunteer otherwise. And yet those of us with cancer are not only not compensated, we generally pay to participate, in the form of deductibles and other out of pocket expenses. In my more than decade of participation I have never even had my parking comped, a not unreasonable expectation as more frequent visits are required per protocol. Ideally, I, like those ‘healthy volunteers’, should be compensated for my time. And any argument that doing so might constitute inducement is ridiculous—I am induced only by my impending mortality. Compensation would merely serve to lessen my financial burden to some degree.

Remember, always remember, that I am a human being. And that when you describe me as either compliant or noncompliant I do not feel respected. 

Know that participation in a clinical trial comes with a certain loss of autonomy. Do not abuse this by favoring the collection of data over my individuality. If a scan or MRI is not clinically indicated, then do not expect me to get one just for the sake of science.

Be aware that not only must I qualify for a trial, I am always at risk of being booted. Whether it is progression itself or a comorbidity that develops once on trial. I had a terrifying scenario several years ago where it appeared I might have developed pancreatitis. When I called my oncologist her first words were ‘I hope it’s not pancreatitis as it would preclude you from participation in any other trials.’ and then she asked me to come in for testing. I refused. Telling her that I may be in a tight situation (I used saltier language) if I had pancreatitis but it was a tight situation with options. If I came in to be tested I would simply be in the tight situation—minus options. This sort of scenario should not exist. 

And lastly, realize that clinical trials are a social contract. Understand and honor my sacrifice in the same way you would a soldier. 

Which brings me to my final ask. 

A year ago I developed resistance to my third ALK inhibitor. In my years of participation in clinical trials I have collected not only side effects and bills, I also have a coterie of resistance mutations. Had it been up to me, I would have pulsed my treatment right from the start, as even to a layman, it made sense that if you take an inhibitor daily, resistance is inevitable. 

However, in this sense I was compliant. And now, eleven years after starting my first phase I clinical trial, I am at the end of the branch. 

There will likely be no 4th generation ALK inhibitor. Certainly not in time for me and perhaps not at all. Why? Because there is no financial incentive. What was 4-6% of those diagnosed with lung cancer has been cleaved and cleaved again by the time you get to resistance with a third gen. 

I am a veteran of these wars. An outlier. And yet, now I must live with the knowledge there is no next treatment.

It is likely that I have now been on this third gen ALK inhibitor longer than anyone else. I am one person. However, as an advocate and activist, I feel the weight of all those who are just behind me. And I ask, what are you going to do when they too develop resistance to a third gen? How will you tell a 35 year old with three kids that there is nothing else to do? 

It is my suggestion that as a part of this social contract, we should not be abandoned. It is a poor return on an investment, it is bad science, and it certainly is not in the best interest of humanity. 

Demand, as I shall be, that our government mandate some sort of umbrella clinical trial to study those of us who are outliers. Honor our contribution. You’ve helped bring us this far, now see just how far we can go. Do not leave us on the battlefield after we have fought so valiantly. Bring us home.

Thank you.

Riding the wave

Water is such an excellent metaphor/medium when I think about this life of mine. At times I have been out to sea. Adrift, drowning, occasionally frozen. Pummeled by one big wave only to have another come crashing down the moment I came up for air.

I love water. My childhood home abutted an irrigation pond the size of a proper lake. I spent winters skating and summers swimming. When iced over, the pond would sometimes groan just before a crack ripped across the surface. In summer I would lie with my face pressed to the boards of a wooden raft, watching as fish schooled in the green dappled water below.

In terms of metaphor, the last few months have resembled a tsunami. As indicated previously, moving was not my choice. Originally my landlord wanted me out by June 1 but we reached an ‘agreement’ allowing me to stay until August 31. That meant I had a little less than four months to pull it all together—locating housing, packing up, moving. My almost three week trip to Italy had already been planned, and I also traveled for advocacy. So four months quickly became three.

Physically, this is one of the most difficult tasks I have ever undertaken. As my loft had been a live/work space, it housed my vintage clothing business, art studio and the accoutrements of everyday life. I am also what is euphemistically referred to as a collector; inquisitive/acquisitive with books as one of my greatest sins. This was a monumental task.

However, I’ve learned a thing or two about crisis management. One foot in front of the other and don’t look down. I focused first on finding a new apartment. It had to be affordable, dog friendly, close to Boston. Ideally I would know someone in the area.

I put a lot of effort into finding just the right place but I also lucked out. Our new home is fabulous—the bottom floor of an old house in Bradford, MA. My dear friend Marc is half a mile away–I can walk there in under ten minutes and we are now in the habit of sharing a glass of wine on his front porch. With Marc’s help I located a dog sitter for Kumo three blocks away. The neighbors are wonderful and the mailman keeps dog biscuits in his pocket.

Moving proved incredibly stressful–at times both improbable and seemingly impossible. However, I am mighty proud of the fact that I got it done. Conceivably that mighty wave could have swept me under.

Instead I found a way to surf the damn thing.

Working it

Last week I spent two days at pharmaceutical companies in Cambridge MA (a mecca for pharma) describing my personal experience with cancer and clinical trials.

As an advocate/activist for lung cancer, I continue to represent the viewpoint that those of us in clinical trials should be treated with deference and respect. That words such as compliant and noncompliant should just go away. That we be compensated for our time just as healthy volunteers are. Perhaps most importantly, that no one lose track of the fact that we are human beings, who are enrolling in medical research not because we want an advanced degree in community service, but rather because we are hoping that these experimental therapies will extend our lives. As people, it is our right to assume that we will not be subjected to a plethora of non clinically indicated testing–we are more than our tissue. That we are pleased that our contribution will help others but that it is not and should not be our primary onus. We, like everyone else, wish to live. And we want to do so with dignity and respect. The current model of more blood, more sweat, more tears, more money has got to be realigned. If it is, recalcitrant issues like accrual and disparity will be addressed as well. Win win.

Blue in the face I am, repeating this message for so long now. However, and this is important, I am beginning to feel heard. The emphasis on partnering with patients—more an aspiration than a reality—means there is far greater interest in learning from patient experiences. ‘We are sentient beings’, I remind my audience. Unlike the white mice who are our direct mammalian predecessors when research moves from in vitro to in vivo, we can communicate. ‘Talk to us’, I say. Listen. Learn. Stop making it so damn complicated. Make us true members of the team and treat us like the astronauts we are.

In September I will have the opportunity to travel to Barcelona as faculty for the annual meeting of the IASLC. I will once again be discussing my experience in clinical trials. Patient as partner; and faculty. It has taken a long time and we have far to travel yet, but progress is being made.

Keep talking.

Dichotomy

A message from an email address I did not recognize. Cryptic, it said only this: ‘He will not last much longer.’

I had been tasked with walking the neighbor’s dog. She had requested that I message her once I had done so and although I had walked the dog, I had forgotten to send an email.

My first thought was that the message was from my neighbor and I responded accordingly. But it bounced right back, undeliverable.

And then I began to wonder. ‘He will not last much longer’ could have a very different meaning in my world.

My neighbor has been apprised that all is well with her pet. I, however, am now on edge and ruing the fact that I am not more meticulous when it comes to recording contact information.

I am also reminded of how close the mundane can be to the extreme, and life to death. How we can use the same language to reference two very different things. And how this is both comforting and disconcerting.

Dichotomous.

This is what stable looks like

NINE. That is the number of times the word stable appears below: 🙂

The relaxed hostess

Cancer crashed my party more than fourteen years ago. The guest from hell. Uncouth, unkempt, possessed of a nasty disposition and with no respect for boundaries. Lousy fucking company.

And then there was the matter of an underlying agenda: this guest intended to kill me. To say the ensuing relationship has been uncomfortable is an understatement. And all attempts to evict the interloper have ultimately proved unsuccessful.

Yep. Chances are cancer and I are in this for the long run. At times I think the only remaining question is which one of us is going to burn the house down first.

Now, with no shiny new weapon to pull from the arsenal, I have had a lot of time to reminisce about previous treatment modalities. Cutting, chemicals and more chemicals. In the process I have lost hair, teeth, toenails. My skin has erupted, my esophagus bled. Sometimes I have not recognized who I had become, inside or outside.

Throughout it all I have viewed myself as a warrior, my body the battleground. Fighting, always fighting.

A few months ago I decided that perhaps it was time to try another approach. I would listen to my body, talk to my cancer. “I go, you go,” I said in a reasonable tone. “But it doesn’t have to be this way.”

I’d like to tell you that my cancer perked right up, slapped itself on the forehead and told me it didn’t know what it had been thinking. Apologized for the selfishness, the nihilism, all that stress it had put us through. That now that it had seen the light, it was going to just pack up and go home. Mea Culpa.

But of course that’s not what happened. And I also discovered that my own sense of antipathy overwhelmed any sort of pseudo empathy I might be trying to pull off.

When all was said and done I realized that there was only one thing left to do. I would decide, yes decide, to simply ice cancer. Just like that. “Cancer, you’re dead to me.”

You know what? It’s working. My stress level immediately plummeted. Already familiar with the fact that not giving a fuck can be a super power (really truly) it simply hadn’t occurred to me to stop caring about cancer.

I had scans last week, a review two days ago. And even though the historical precedent has been that once progression starts, it just keeps going, I felt calm, cool and collected. I already knew. My cancer is stable. STABLE, Y’ALL.

We’ll discuss this further. But in the meantime, think about it. Pretty much everyone with cancer is stressed out all the time. 24/7. Can’t be a good thing.

What I’m doing now—deciding not to care—isn’t just some simple party trick. It takes determination and a strong, strong will. But the positive feedback was instantaneous once I figured out how to let go of the stress. Give it a go. Even if for just a few minutes or an hour or two. And then see if you can do it longer.

I am not cancer free but then again, I am cancer free insomuch as I am anxiety free. And I will wager that is bad for the cancer and good for me.

Oh dear hearts

Eleven ounces and no larger than a clenched fist. In my own case, shifted to the left, post lobectomy. When I roll over I can feel it, right there, underneath my breast. Beating, beating, beating.

Blood in, blood out. Breath in, breath out. Pumping, inhaling, exhaling. Pulsing; without pause.

Our little workhorses, heart and lungs. Flesh, muscle, vapor, fluid.

Animated tissue that is our emotional core. Breath can be taken away, a heart broken; we feel it right here, in our chest.

Today, a heaviness. The weight of those who have been traveling the same path but for whom the journey has now ended. Called home, as it were.

I ponder the possibility that my weighty heart is in stark contrast to theirs, which is now light. That I am holding them here, in my heart yet, but that dying is a letting go. Maybe even a sort of euphoria.

An end to pain but also a new beginning. A rolling back into the scrum that is all of life. Unbound. Unburdened.

But always loved.