Category Archives: Advocacy

Couldn’t

I just missed World Lung Cancer Day. Well, not quite. I did spit out this tweet:

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For those who were able to post something inspirational, I have nothing but respect. But I just found myself unable to embrace the concept of a day devoted to lung cancer.

That’s because for those of us living with this disease, every single day is lung cancer day. And every single one of those days, we wish it wasn’t.

If we’re not dying, our friends are. This disease is a holocaust, a catastrophe, a fucking disaster. And although there is nothing wrong with ‘raising awareness’, we absolutely cannot stop there.

As important as it is to inspire, it is also necessary to incite. Complacency equals complicity, folks. And if we are going to inspire anything, it should be a sense of urgency. And raising awareness? Let’s put the money where our mouths are and raise funds; moneys for lung cancer research. How about devoting November to one giant bake sale? Or a virtual bake sale, with a go-fund campaign devoted to lung cancer. Let’s make our goal a million dollars. I mean, why not?

A cookie for a cure. Let’s do it.

Losing it

Earlier this week I made my morning cup of coffee immediately upon rising, just as I always do. But then I couldn’t find it. Anywhere. And I live in a one room loft. I also left my eyeglasses at a local restaurant over the weekend and as their staff’s search turned up nothing, I’m going to have to buy a new pair. Yesterday I misplaced the bra I was planning on wearing. I later found it in a bowl of oranges. Don’t ask, as I couldn’t answer, because I simply do not know.

Sometimes it’s funny, other times it’s frustrating as hell.

All these years of clinical trials and continuous treatment are catching up to me. Add in menopause and advancing age as well as the fact that I live alone, in itself a rather extraordinary thing for a person dealing with a terminal illness.

Yet there is an upside. I am now convinced that children have incredibly short attention spans by design (so to speak). That if they were able to mull, ponder and plan the way adults do, they might well waste the precious time allotted to childhood. There is a magnificent advantage to a wandering perspective–so incredibly well suited to experiencing the world with eyes wide open and without bias.

With my limited ability to recall, I am rather like a child. Everything feels fresh and seemingly brand new. My focus is short, but also incredibly intense. At times it as if I am tripping, my senses tickled by any stimulus at all. As an artist, this is a boon. Emotionally, it can also be of enormous benefit, as I am no longer prone to extensive rumination; once upon a time, losing my (beautiful and expensive) blue eyeglasses would have undone me, at least for a time. I regret their loss, but in the same way a child mourns a broken toy–briefly.

It is only when I need to function as an adult; someone with responsibilities and hard deadlines, that this lack of linear concentration becomes a true liability. I would in fact consider it almost a disability, although one that is neither obvious nor fully understood by those around me. I believe that might be because my cognitive challenges don’t reflect diminished intellect but rather the increasing inability to retain, recollect and organize information.

I could use some help–some sort of cheery task master. Someone who would commit to a couple of hours each week to assist me with those chores I now find so daunting (paying bills, taxes, getting my vintage clothing business up and running, managing my finances).

I already devote well over a third of my income to health care and I think a personal assistant is likely a luxury above my means. However, I would like to propose that there should be some sort of federal agency (yes, I’m dreaming) akin to the U.S. Department of Veterans Affairs for clinical trial participants. That there be recognition (on the federal level) that in the war on cancer, clinical trial participants are serving on the front line. And that we, like veterans of other wars, deserve some sort of special consideration of both what has been given but also taken. Financially, emotionally, physically.

I’m committed to continuing to fight the good fight–and I do so gladly. With or without assistance. However, if anybody out there with mad organizational skills and a little spare time wants to come hang out, coffee’s included.

*if I can find it 🙂

Whoa

Has it really been more than a month since I’ve posted? It has indeed and what a month plus–lots of water roiling under that bridge.

So where to jump back in…perhaps with my last scan result, which I think I just sort of skipped over. Things look really, really good with the worrisome area in my right lung settling down; maybe even receding a little. I have scans again in five weeks and in the meantime I’m just going to keep busy with lots of positivity. To that end a friend of mine shared that he felt certain I was ‘healing’. It took me aback at first. I’m a truly optimistic person but the notion of healing just seemed over the top–that is, until I looked at that word in a holistic sense and then I realized he was absolutely right. Between mind, body and soul I am feeling extraordinarily healthy–maybe even the best ever (and I’m sure tomorrow will top today).

I’ve had a couple of truly meaningful adventures (all three thanks to LUNGevity) since I last posted. On October 21st I had the privilege of attending LUNGevity’s 2016 Science Meeting; an annual event where grantees (a big part of LUNGevity’s mission is funding medical research in lung cancer) in the areas of Career Development, Early Detection and Targeted Therapeutics gave five minute presentations in addition to a poster session about the progress they are making. It was sort of like a mini ASCO up close and personal but focusing exclusively on lung cancer.

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And then on November 9th I traveled to NYC for LUNGevity’s Celebration of Hope, their annual gala held at the beautiful Mandarin Oriental. It was an incredibly special night all the way around. Andrea Ferris, Linda Pressman Wegner, Dr. Upal Basu Roy and the rest of the LUNGevity staff feel like part of my extended family now and it is always fun and inspiring to spend time with them. My dear friend Melinda Lee was my date for the night and Rob Densen and his daughter Arielle, fabulous friends of mine that I see too seldom, joined us. And of course, some of my fellow survivor/advocates/friends were also in attendance–Alisa, Dolio, Amanda. Always good to hang with them.

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I suppose I would be remiss if I failed to mentioned that I was honored that evening with the Survivor Face of Hope Award. I should also add that this meant the world to me, coming from an organization that I have so much respect for. And although some in attendance hoped I’d give a speech without notes (think HOPE Summit 2016) I stuck to the script–I absolutely cannot be trusted to be spontaneous, for a whole variety of reasons.

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Photo by Alisa Kaye Brenes

Well, I’d barely gotten my bags unpacked when it was time to leave for Indianapolis and a tour of the Lilly Labs. My inner geek was thrilled–interacting with members of the Lilly team and a few cancer cells as well–viewed at a safe distance through the microscope. And of course, I also got to spend some quality time with my fellow advocates. Never a dull moment!

Matt, Katie, Linne, Melissa and Kelly.

Matt, Katie, Linnea, Melissa and Kelly.

The downstream effect of two miracles of science

My friend Dr. Tom Marsilje wears a number of hats–devoted parent, dedicated scientist, cancer patient and absolutely amazing advocate/activist.

Tom holds a special place in my heart and personal history but sometimes I have to stop and remind him; we both suffer from chemo brain, a subject he recently covered in his column for the The Philadelphia Inquirer.

He was in town briefly last week so we met for lunch and a photo op in front of Miracle of Science in Cambridge. I mean, how could we not.

Linnea and Tom: two miracles of science

Linnea and Tom: two miracles of science

After snapping our selfie we headed down Mass Ave to Flour, one of my favorite little cafes. Lunch banter was about any number of things including Tom’s relatively new role as a writer, and he noted that it makes him feel good to be really making a difference. I just looked at him incredulously before exclaiming “Dude!”

At this point I should remind you that Tom codeveloped LDK-378, the second ALK inhibitor I was on trial for. Also known as ceritinib and now marketed as Zykadia.

I then used my finger to draw an imaginary line on the table. “This” I said, “is my lifeline. And this is where I started taking ceritinib. No ceritinib and my lifeline stops right there.” And then, for further emphasis: “I am alive because of you and don’t think I ever forget that, even for a moment.”

By this point I was getting a little weepy. I went on to say that if Tom were a war hero rather than a scientist who developed a lifesaving drug for a pharmaceutical company, than his role would not be so seemingly anonymous and that he would be celebrated. But that the lack of accolades in no way diminished what he had already accomplished, which was to extend the lives of so very many ALK positive cancer patients. Including yours truly. And that I was grateful to the moon and back.

Such a tight connection between the individuals who come up with these drugs and those of us who take them. A lot of cause and effect going on there and to think that Tom and I would have the opportunity to also develop a human connection is just way, way cool. This guy had my back long before he ever met me (but must of known of my existence as an ALK+ individual). Gotta say I’ve got his back now but sometimes that just feels like hanging onto contrails as he’s jetting around with astounding energy and putting his fine intellect and experience to work as an advocate/activist for patients with advanced cancers. I feel both honored and blessed (and damn fortunate) to have him in my life.

Which leads me to this closing thought: maybe we should nave a national hug a medical researcher day. Followed by a bunch of bang up fundraising.

xo

When noncompliance is your best option

Last week Lungevity hosted the Scientific and Clinical Research Roundtable in DC and I was invited to be the keynote speaker. Really. I could be wrong but I have a sneaking suspicion that most of my invitations to speak will not be followed up with a second invitation. I have transitioned unequivocally from advocate to activist and I’m not sure everyone is ready to hear what I now feel the strong need to say. In a nutshell, I feel that clinical trial participants are the graduate students/sherpas/indentured servants of the cancer world. We do the heavy lifting–it’s all guts and no glory but we can’t say no because we’ve got nowhere else to turn.

I’ve shared the entire transcript of my talk here. It’s a long haul and for those of you familiar with my story, there will be some repetition in the first half. But then I get down to nuts and bolts (or screws and nails, the way I describe my neuropathy).

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Good afternoon. I am happy to be here today. In fact, I am happy to be here every day.

It’s not something I take for granted, ever. The first thing I do when I wake in the morning is to say ‘I’m alive.’

The wonder never lessens. And that is because a little over eight years ago, I heard the words ‘there is nothing else we can do.’ Never one to turn away from the truth I wanted to know more, I wanted to know how much time remained. The answer was three to five months.

And so I began to let go of my life—and to help my family do the same. Both I and my youngest, then eleven, started individual counseling. I travelled to Colorado, for a hastily organized and tearful family reunion. I said my goodbyes.

But then at my next oncology appointment something totally unexpected happened. A recent biopsy had been submitted for genetic testing and had come back positive for a newly identified target in non small cell lung cancer, an ALK translocation. A phase I clinical trial for an experimental agent targeting ALK mutations had begun recruiting at my hospital. So far there had been only one other participant and he had died within weeks of starting the trial, in part because of side effects of the experimental agent.

It was not a lot of information to go on but I liked the sound of targeted and my oncologist, though cautious, seemed enthusiastic as well. I hoped the drug wouldn’t hasten my death, but I knew that if I did nothing, my cancer would surely kill me. I was between a rock and a hard place but the way I saw it, this clinical trial offered at least a sliver of hope where now I had none. And I said yes.

On October 1st of 2008 I became the fourth person in the world with non small cell lung cancer to take crizotinib. Seven weeks later, as we went over my scans, my oncologist characterized my response as flipping amazing. And all those goodbyes became hello, I’m back.

I got lucky, really lucky. I was at the right place, in the right time, and with the right oncologist. And I’ve been lucky ever since, having now been an early participant in three phase I clinical trials. Innovative medical research has extended my life far beyond what I ever thought possible.

This has meant the world to me and my family. In June, almost eight years to the day after I was told I had three to five months left to live, I watched my youngest graduate cum laude from Phillips Exeter Academy. Four weeks ago he began his freshman year at MIT.

And me? I’m loving life, all of it. 45 when diagnosed, I will turn 57 in November. Between my three kids, art, writing, advocacy and my plethora of friends, I couldn’t be busier.

Of course, I do still have lung cancer. Although I have enjoyed two years of stability on my current therapy, my most recent scan showed progression. I have scans again in two days, and by next week, I should know if it is time to switch things up again.

I hope that medical research will stay one step ahead of me. I also hope my body will hold out.

It has been my privilege to participate in clinical research. But it has also been my burden. I have shared my joy, my gratitude. Now I would like to share my concerns and I feel I have rather a unique perspective for doing so.

There was an old paradigm for clinical trials, and that was that they were usually a one off.

When I enrolled in the trial for crizotinib in 2008, it was with the hope that it might extend my life for several months, nothing more than that. Because honestly, there was no precedence.

Even once it became clear that I’d in fact responded to the experimental therapy, my joy was tempered with the knowledge that I would eventually develop resistance to the drug and that when I did, I was once again out of options. Because that is where things stood in 2008.

I never imagined that I would go from trial to trial, and, at that time, I’m not sure anyone else could have imagined such a scenario either.

But I have and my participation has kept me alive. However, it has come at a price.

Enrollment in a clinical trial requires a greater commitment of time, resources, blood and tissue. And often, additional scans as well.

The clinical trial that I am now enrolled in initially had a protocol that required not only a Chest CT scan, but an abdominal scan, brain MRI, and echocardiogram every six weeks. I might point out that a schedule more akin to every three months is the standard of care when it comes to scans for a metastatic patient. I might also point out that my histology, invasive mucinous adenocarcinoma, almost always stays confined to the chest when it metastasizes, and that I have never had brain, bone or abdominal mets.

Initially my trial also required a bone scan, every three months. I had the first one, and afterward was handed the the same little card that you carry around for three days after every PET scan, just in case someone in law enforcement or at an airport picks up remaining background radiation. This struck me as ludicrous, and also an unacceptable risk with neither scientific justification nor personal gain. I told my oncologist that I wasn’t going to get any more bone scans even if it meant dropping out of the trial. Fortunately she is as invested in my future as I am and as a PI in the trial, was able to contact the sponsor and had the protocol changed.

Fast forward to July of 2015 when I happened to see a report in the Stanford Medicine newsletter regarding DNA damage seen in patients undergoing CT scanning. This line in particular jumped out at me ‘“We now know that even exposure to small amounts of radiation from computed tomagraphy scanning is associated with cellular damage.” I started to think about all the scans I’d had and would continue to get and wondered if anyone was keeping track. With access to my electronic medical records, I decided to tabulate the results myself and what I found shocked me. Now keep in mind that this only reflects care and clinical trial participation at my current hospital, and does not take into account previous imaging, such as the scans that led up to my diagnosis. Or workups for other health issues, or routine imaging such as mammograms or dental work.

When I sat down and counted I found that I’d had 19 chest x-rays but also close to 70 CT scans of my chest. For those of you who don’t know, each chest CT scan, even those that are low dose, has the equivalent radiation of 4-500 chest x-rays. Now multiply 400 times 70 and tell me if that is a number you are comfortable with. I was really surprised when I counted the number of abdominal scans I’d been given; 44. Given the complexity of the tissue in the abdomen, scans of that area of the body expose cells to an even greater amount of radiation. And keep in mind that I have no cancer in that part of my body. Yet. But I do have highly mutable cells.

The first CT scan of my chest saved my life. But is my scan schedule eventually going to lead to a secondary cancer?

I don’t know, but I can’t let that happen. And so I did what any reasonable person would do. I spoke not only to my oncologist, a PI in the trial, I contacted the sponsor personally. However, I really made no headway until I talked to the right person in a bar. That’s right. I have been a peer reviewer for the CDMRP for a number of years and after a session last fall I chatted up a fellow reviewer in the bar—told them my tale of woe. When I concluded he let me know that his wife worked for the sponsor and he was going to share my story with her.

Well sometimes the back door is the right one and this time the sponsor contacted me. I had a private phone conference where I spoke not only about my scans but about what I view as a rather prevalent disregard of the sacrifices clinical trial participants make. And I asked that they not only change the scan schedule, but that they pay for parking.

When I got my response it was from my scheduler. My scan schedule would not be changed. I told her to tell my oncologist that I now had no choice but to become noncompliant—that I would continue to get CT scans of my chest but there would be no more abdominal scans.

I am fortunate that my oncologist truly is as invested in my future as I am. She called me almost immediately and we discussed the situation. To my surprise, she was fully supportive, although she did explain what noncompliance put at risk for me personally as well as for the trial and my institution. I told her that if she asked me to go to Mars the next day I would do it, I trust her so implicitly, but that I simply could not keep getting scans every six weeks for the rest of my life.

The bottom line is this—currently clinical trials are monitored as discreet events, a residual of the old one-off paradigm. No one seems to be keeping track of patients such as myself, who are traveling from trial to trial. I am an outlier, an exceptional responder, and I am also a bit of an anomaly amongst the ALK positive population with my invasive mucinous adenocarcinoma histology.

But that is the point—I am first and foremost an individual, a human being. Participation in clinical trials does not cede my humanity, although it certainly does result in a certain loss of autonomy. And words like compliant and noncompliant only underscore that fact.

Per my scans—I really like to do things the right way. Also, as an advocate, this was never just about me but rather about everyone who participates in clinical trials. And so I would periodically contact the sponsor. What I didn’t realize is that my oncologist was also in continuing dialogue with them about the scanning schedule. Several months ago I got word that the protocol would be changed and that after a year on trial, participant’s scans would move out to every three months, the standard of care. When I spoke to my oncologist, I realized that it was her input, not mine, that made the real difference. But the important thing is, she respected my concerns which motivated her to request a change in protocol.

As for me, I moved to the every three month schedule as soon as I heard the news, even though it is not yet official. Jumping the gun a little, but then again, I remain noncompliant as to my abdominal scans, so what’s a skipped chest CT scan or two. And don’t think I am simply being cheeky—I donated my body to science a long time ago and I feel no guilt when it comes to a skipped scan or two.

I still wish I didn’t have to get brain MRI’s every six weeks—I’ve now had almost thirty and nothing causes me more anxiety than the loud clanking, claustrophobia of a brain MRI. Also, I am convinced that we don’t yet understand the risks—again, there is very little precedence for such a frequent MRI schedule in someone with healthy brain tissue. After reading that the contrast agent, gadolinium, is not readily cleared from the body I did request that we forgo contrast so that is one small victory.

The irony is, were this anything other than a clinical trial, say, a war or a sporting event, I and my fellow participants would not be fighting for our basic human rights. We would be decorated for our valor, celebrated, maybe even highly compensated. And we can’t even get our parking comped.

And yet, I am alive. It is a wondrous thing, and something most people take for granted.

I would do almost anything to stay alive. I already have. But I am also not willing to throw away this second chance at life by submitting to ridiculous requirements simply to satisfy the science and to speed drugs to market. As Richard Pazdur has said, ‘People are not for clinical trials. Clinical trials are for people.’ It’s imperative that we not lose sight of why trials exist in the first place. It is not to advance the careers of researchers. It is not to keep oncologists and hospitals in business. It is not to enrich sponsors and their shareholders.

Rather, it is to provide patients such as myself with an opportunity to hang onto our very dear lives.

*for a dose of happy/hopeful Linnea, check out this video interview about Clinical Trials from the Lungevity site.

Just not a just world

There are two kinds of people. Those that believe life is fair (everything happens for a reason) and those who don’t (shit happens).

These differing viewpoints may seem like no big deal until you start thinking about the moral implications of belief in a just world. I suppose if everything is working out for you it’s a pretty convenient philosophy. However, if life has thrown you some major curves (such as a diagnosis of terminal cancer) than you probably don’t believe we all get what we deserve.

My own diagnosis of lung cancer left me completely gobsmacked. How on earth did a young, seemingly healthy woman who had never ever touched a cigarette (me) get lung cancer. And yes, I was struck by the unjustness of it all. I mean, why me?

Well, first of all, lung cancer in non and never smokers is nowhere near as uncommon as most people believe. Approximately 60-65% of newly diagnosed cases occur in former or never smokers.

Secondly, life is not fair.

However, most of us grew up believing in a just world, a well ordered place where sensible and good behavior was rewarded and risky or bad behavior duly punished. This viewpoint not only shaped our moral code, it lent us an invisible cloak of safety.

This philosopy is the very reason that those of us with lung cancer are consistently asked as to whether or not we smoked. The asker wants to be reassured that our lung cancer is the direct result of cause and effect. Of course they haven’t stopped to think about how this question will impact us. If the answer is yes, the implication is that we are the agent of our own misfortune. And if it is no, we are reminded once again of our extraordinarily bad luck.

Belief in a just world is the thinking behind the stigma associated with a diagnosis of lung cancer. Stigma is defined as ‘a mark of disgrace associated with a particular circumstance, quality, or person’. In the case of lung cancer, our diagnosis is inextricably linked to shame and a blame the victim mentality.

Which makes us all incredibly sensitive to any suggestion that cancer, and our disease in particular, is almost entirely preventable. ‘Helpless to Prevent Cancer? Actually, Quite a Bit is in Your Control‘ reads the catchy title of a recent article from the New York Times. The author, a professor of pediatrics (and therefore, I think, not an expert on adult cancers) makes statements such as this: ‘… you’d have to be living under a rock not to know that smoking causes lung cancer…’ Or this ‘About 82 percent of women and 78 percent of men who got lung cancer might have prevented it through healthy behaviors.’ The author makes a stab at empathy with this observation: ‘You don’t want to get into situations where you feel as if people don’t deserve help because they didn’t try hard enough to stay healthy’. However, the word deserve and that bit about not trying hard enough harkens right back to shame, shame, shame.

The way in which disease is characterized matters. Talking about lifestyle changes that can optimize health is always a good thing, but it is important to remain sensitive to the language that is used.

Calamity of all sorts and cancer in particular is often beyond our control. Nobody deserves lung cancer, whether they smoked or not. But sometimes, shit just happens.

 

The heart of advocacy: AACR Scientist↔Survivor Program

An advocate is someone who takes a public position on a cause or policy. My initial steps into lung cancer advocacy were as a spokesperson–I shared my story with the goal of spreading awareness (even a young, never smoker such as myself could get lung cancer) but also hope–although given a dire prognosis I was alive, thanks to an experimental therapy.

However, I was soon itching to do more and became a peer reviewer for the CDMRP—Congressionally Directed Medical Research Programs. My background as an artist did little to prepare me for the rigor of scientific proposals, but I found that I really enjoyed the intellectual challenge.

I owed a lot to medical research and as a participant in three phase I clinical trials, I had some hands-on experience (fieldwork, if you will). It became clear that medical research was the aspect of advocacy that I was most interested in focusing on. When I heard about the AACR Scientist↔Survivor Program I knew it was the perfect fit for me.

The program coincides with the Annual Meeting for the American Association for Cancer Research and this year it was held in New Orleans. As anticipated, I refined my understanding of the basic biology of cancer (particularly a wonderful Mini Med School presented by Dr. Carolyn Compton on our first day) and also had the opportunity to sit in on not only plenary sessions but smaller presentations around topics including precision medicine and genomics. We attended a policy overview and a special session with the FDA, led by Dr. Richard Pazdur, who lost his wife to ovarian cancer (and also learned a lot about the drug regulatory process from a different perspective, that of the patient). Dr. Pazdur said something during this session that I found very impactful: ‘Patients aren’t for clinical trials. Clinical trials are for patients.’

Being at Dr. Jean Cui’s (she developed crizotinib) poster session and having her greet me as if she were expecting me for tea was pretty darn special. And I even had an out of body experience when I saw my lungs on the big screen during one of the plenaries (the presenter was Dr. Jeffrey Engleman and the topic was resistance to therapy, for which I am a poster child).

C'est moi.

C’est moi.

The single most significant thing I learned from my experience can be found in this statement from the AACR SSP online site:

The AACR Scientist↔Survivor Program is designed to build enduring partnerships among the leaders of the scientific, cancer survivor, and patient advocacy communities worldwide.

The word partnership. Far too often Patient as Partner–a term bandied about in medical circles now–is mere rhetoric. Western medicine is still in the process of transitioning from a very paternalistic practice to one in which the patient is in fact viewed as a partner in his or her own care. The AACR SSP program is trying to push that needle forward by empowering patients/advocates with true knowledge and understanding. It is an incredibly respectful viewpoint, and I am so grateful to Dr. Anna Barker for creating and sustaining this unique program. I encourage anyone who is interested in sharpening their advocacy skills to apply.

As for me? I came away committed to not just medical research, but the patient voice, and particularly that of patients with advanced, or metastatic disease. I’ve already had several opportunities to champion that cause, including a seat on a panel (Stakeholder Panel Discussion: What are the challenges and opportunities for research and delivery of care across the cancer journey?) at the American Cancer Society’s New England Cancer Center Leadership Roundtable this past Monday. At the conclusion of the meeting participants were queried as to the greatest takeaway from the day. And the unanimous response? The patient voice.