Monthly Archives: September 2019

This girl’s busy

At WCLC
with the famous Janet Freeman-Daly

Getting home from Barcelona was a bit of an adventure as our flight was delayed and it looked as if I would miss the connection in Zurich. However there were three of us traveling to Boston and when we landed in Zurich, they had a van waiting on the tarmac. We were zipped off to two passport checks (everyone running) and then through a tunnel under the runway to our waiting plane. Very James Bond.

There was no time to indulge in jet lag as I had a commitment the day after my arrival home. An awards ceremony, Xconomy Boston 2019 . I had been nominated in the Patients First category and was one of three finalists. It was an honor to be nominated but I also felt I was way out of my league. However the prospect of sitting at a table for the evening with my oncologist Alice Shaw and her husband Stan (I work with Stan at HMS)–this was reason enough be in attendance.

Well surprise, surprise when they announced my name as a winner.

Alice Shaw, Linnea Olson, Stan Shaw

It was a fun, fun evening out with two of my favorite people. Two days later I was in Amesbury for the annual Live It Up! LUNGSTRONG, hosted by Diane Legg and her husband Dave. Held at their charming Victorian in Amesbury, the party looked as if it might be rained out but the cadre of volunteers–friends of the Leggs and their three sons–kept the food and good cheer coming.

Diane, who has been living with lung cancer for more than fifteen years now, founded LUNGSTRONG in 2011. This grassroots organization has now raised over $4,000,000 (yes, four MILLION dollars) for lung cancer research. Diane is not only a dear friend, she is one of my personal heroes.

Fatigue slowed me down a bit for the next few days, but I finally had a window in which to start pulling together my new living space. And then a guest appearance at a town hall meeting for Foundation Medicine on Thursday followed by reception at Harvard Medical School that evening and then a presentation to an international gathering of YPO the following afternoon.

At a time in our lives where so many of my friends are retiring, I often feel as if I am just starting my career. The good news is I love what I am doing.

This week I drove to NYC will my friend Bill Burke for the opening of his show with Lois Connor at Fordham University’s Idiko Butler Gallery (September 23–November 13 2019). Good times. The following morning I was to speak again at Harvard Medical School so I caught an early flight back. Friday I had scans and that evening I began training for a new volunteer position with C4RJ–Communities for Restorative Justice. I am passionate about criminal justice reform and it will be good to get out of the cancer wheelhouse just a bit.

I flew to Philadelphia this morning, and tomorrow I will be sitting on a panel at Fisher Scientific’s Allentown Innovation Summit–participating in a discussion on decentralized clinical trials. Back home on Wednesday and in Boston again on Friday for my scan review.

When first diagnosed with lung cancer, I made a decision that I’d just keep walking–because most people die in a bed. Motion creates an arc rather than a point in time.

No lying down on the job for me. My goal is to arc/flame out.

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.