5K for lung cancer research

Life has been complicated and unbloggable. However, my health remains good. I keep having one clean CAT scan after another.

I’ve been working up to running a 5K, using the Couch to 5K running program. I am very slow (some people walk faster than I run), but kind of excited that I can now run slowly for almost 30 minutes continuously. It helps me with anxiety, stress, and sleep. It gets me outdoors in the fresh air. I marvel at being able to breathe that fresh air.

My goal is to complete the Philadelphia Free to Breathe 5K on Sunday, November 2. If you’d like to sponsor me, run with me, or walk, please click on the link below!

http://participate.freetobreathe.org/site/TR/FreetoBreatheSignatureEvents/General?px=1515834&pg=personal&fr_id=2660#.VEOv4oeporp

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Acquired Resistance Patient Forum

The major concern with my miracle drug, and others like it, is acquired resistance. Targeted therapies such as crizotinib work beautifully against cancers with the target mutations they are designed to exploit, but not forever. Eventually, the cancer mutates again, outsmarting the medicine.

I’m going to THIS next month, to hear from an all-star lineup of scientists, doctors, and patient advocates from the forefront of the research:

http://cancergrace.org/acquired-resistance-patient-forum-september-6-2014

It’s also my first chance to meet other ROS1 patients face to face. I can’t wait.

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11 months and counting

I just had another beautiful CT scan last week, marking my eleventh month of progression-free survival on crizotinib (Xalkori). The doctor said that results from the study are starting to suggest that people with the ROS1 mutation may actually do even better on crizotinib than people with the ALK mutation, for whom the drug was designed. Our median progression-free survival on crizotinib may be twice as long, or even more.

Progression-free survival is just what it sounds like: the amount of time a patient is able to survive without the cancer progressing, or growing. It’s not the same as overall survival, which is the length of life after diagnosis. Right now my overall survival is about 19 months.

I am remarkably well. I am down to just two prescription medications that I take on a daily basis: crizotinib, and Dexilant for reflux. I also take vitamins and some Chinese herbs from my acupuncturist.

I’ve been working out with weights twice a week at the campus gym. I just tried the first workout of the Couch-to-5K running program this morning, and it felt very good to jog and walk outdoors. There’s a fabulous big park near my house, with trails that wind through woods and along meadows full of tall grasses and wildflowers.

This spring and summer I’ve been the matron of honor in my sister’s wedding, successfully defended my dissertation proposal, and taken a two-week research trip to an archive in Indianapolis. You really wouldn’t know I had cancer, let alone Stage IV lung cancer.

I have a few symptoms and side effects, but they are fairly tolerable. My digestive system is sensitive, and if I eat certain foods or drink too much coffee I can easily get diarrhea. Over the past few months I’ve also had a couple of very random episodes of vomiting. They seem to be triggered by nothing in particular, and they go as soon as they come. I’ve started carrying my anti-emetics (Zofran and Compazine) with me again. Finally, I’ve gained some weight, and it seems to be pretty stubborn. With exercise and calorie counting I’m able to maintain weight, but not really lose any. (All the doctors and nurses say not to worry about losing weight, but I’m over 200 lbs and really wish I could be a little under.)

I am starting to get my head around the idea that I might really be able to stick around for years to come.

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Life beyond lung cancer

A strange thing has happened in the past couple of months: I’ve become intensely involved in finishing my final qualifying exam and my dissertation proposal, which have nothing whatsoever to do with lung cancer. I’ve been working with a coach who has encouraged me to make those academic projects my top priority and to spend 2-3 hours a day working on them without distractions or interruptions. I’ve been working in 30- to 60-minute blocks, setting a timer and trying hard not to look up from my work until the timer goes off. The results so far have been splendid: I submitted the qualifying exam last week, and have written significant chunks of my proposal. I’m able to get up in the morning, see my daughter off to school, make my coffee and then just start writing. I don’t think I’ve ever been this productive before.

Sometimes I almost forget I have cancer. Other than my crizotinib pills and my monthly visits to Sloan-Kettering, there aren’t many physical reminders right now. When people ask how I’m doing, the first thing that comes to mind is how good and productive I feel. It can take me a moment or two to remember that they are probably worried about me because they know I have a terminal illness, and might be interested to know how well my medication is working.

Crizotinib keeps working well. Two months ago, my CT scan found a small, new spot on one of my lungs, and I worried about it. I had another CT scan last week, though, and that new spot had disappeared. We had extremely cold weather in the Northeast this winter, and sometimes in the extreme cold I could find myself wheezing or a little short of breath; I asked the university for a new medical parking permit, to avoid having to walk half a mile to campus when it was under 20 degrees. It’s finally spring now, though, and I am enjoying that walk again.

Sometimes it feels funny to make my academic work my top priority, burying my nose in books and putting off answering an email about next year’s Free to Breathe walk, updating the blog, or catching up on the #LCSM (lung cancer social media) tweetchats. I love my work, though, and it is a big part of what makes me feel good about being alive and in such good health. Eventually I will add more of the lung cancer advocacy back in, either because I’m that much more organized about my dissertation and can do both, or because my priorities shift again.

I feel grateful to look at my stats and see that even while I haven’t been writing any new posts, people have continued to read the blog. I have tried to set it up as more of a manual to living with lung cancer than as a day-by-day chronicle of my own struggle, and I hope most of the posts will be timely no matter when you look at them. I can’t promise I’ll actually post very often in the next few months, but I thought that at least a small update on my own life was in order. I hope that it’s useful in some way just to know that someone out there with advanced lung cancer is healthy enough to occasionally forget, and to work on other important things for a while.

On a sadder and more serious note, one of the young lung cancer bloggers who inspired me has died. You will see that I’ve moved Jessica Rice’s blog from “Blogs by lung cancer survivors” to “In Memoriam.” I didn’t know Jessica personally, but her blog was full of energy, life, and inspiration. It still is, but tempered now by the awful sadness of losing her. I often say that lung cancer research is now where AIDS research was in about 1995: some people who are very ill now will still be alive and well ten years from now, but we don’t know yet who those people will be. I am so sorry that Jessica will not be among them. She deserved to be.

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Breast cancer, lung cancer, AIDS: unorthodox thoughts about stigma

57 beth smaller

Lung cancer research gets far less public attention and research funding than other, less deadly cancers. It’s often perceived as a disease people bring on themselves by smoking, or a disease that could have been prevented by not smoking. Until I had lung cancer myself, I didn’t even know nonsmokers could get it, and neither did most of my family and friends. In the fledgling lung cancer community, we often make comparisons to breast cancer and AIDS. We speak of a “stigma” of lung cancer, and wonder: where are our ribbons, our celebrity spokespeople, our massive public education campaigns?

While the discrepancy in public awareness and in research funding angers me, I have experienced lung cancer stigma as relatively mild. This is an unorthodox thing for a lung cancer patient to say, and requires some explanatory context.

I’m a lesbian. A professional career ended, very dramatically, about ten years ago when I decided to come out of the closet publicly. I’ve been a foster parent, and have had to buy formula and baby cereal with WIC vouchers. My partner is transgender (Chris doesn’t fit comfortably into either the “male” or the “female” box), and lots of people in our lives don’t know how to make sense of that. I teach college courses at a state prison, and see how the “ex-convict” stigma will dog my students forever, no matter what great things they do with their lives after release.

The comparison to AIDS is particularly facile, and I refuse to make it. In the late 1980s hospital staff in many places would not even enter the room of a person with AIDS. They would leave food on a tray outside the door. AIDS raged through communities of people our society already considered diseased and degenerate: homosexuals (the mainstream media didn’t say “the gay community” yet), intravenous drug users, and Black immigrants. Some religious groups framed AIDS as God’s wrath, poured out on sinners who deserved to die. It wasn’t just the extreme reactionaries who used this rhetoric; in college, I heard it from members of my middle-of-the-road United Methodist church.

Take a look at the above photograph, by my beloved friend and Philadelphia photographer Zoe Strauss. I’ve owned a print of this photograph for years and it’s hard for me to say just why I love it so much. Maybe it just reminds me that most of the bad things people say are  not true. Today, with Zoe’s permission, I am posting the photograph to remind myself how terrible AIDS stigma was, and still is. If the graffiti said “Beth has lung cancer,” would the hateful intention be as clear?

On a day-to-day basis, lung cancer stigma is something I experience but can handle. On a scale of 1 to 10, I’d put being asked if I ever smoked at about a 3 on my personal rage-o-meter. To put this in context, the questions I get asked about my daughter, who is adopted and a different race from me (“Is she really yours? Where is she from? Was her real mother very young?”) are more of a 7. Being asked what I do in bed with my partner is a 10.

I realize this makes me an outlier, particularly among young white women with lung cancer. Still, I think we will do the best job of fighting lung cancer stigma when we understand what it is and isn’t.

An Australian professor of public health and her colleagues have reviewed most of the substantial English-language scholarly literature on lung cancer stigma and its impact on treatment outcomes. The evidence is suggestive but inconclusive. Smoking-related stigma is definitely a part of the lung cancer patient’s experience of life and death. Some advanced lung cancer patients may delay medical treatment or choose not to pursue treatment at all because they fear being stigmatized, or because the only options they know about sound painful and not very effective. Their experience of cancer can include feelings of guilt, shame, and blame. Some may even fear they will be refused treatment. On the other hand, adequate quantitative research has not yet been done to show if stigma is genuinely affecting the treatment and survival of patients with lung cancer.

Chambers argues that another factor in lung cancer care is “therapeutic nihilism.” Some family doctors are not up to speed on the newest treatments for lung cancer, and may consciously or unconsciously communicate a sense that a Stage IV lung cancer diagnosis automatically means a rapid and painful death. Some patients may assume this from the beginning, and have trouble being convinced otherwise by their doctors. (See Suzanne K. Chambers, et al., “A systematic review of the impact of stigma and nihilism on lung cancer outcomes,” BMC Cancer, May 2012, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3517321/).

I don’t actually think lung cancer stigma is the main reason for the huge discrepancies in research funding. I think what makes the biggest difference in research funding is a large, organized, educated community of people who demand more research and smarter research, stigma or no. This kind of organized community is the reason breast cancer research has so much funding now. Breast cancer advocates began organizing decades ago, when diseases that affected mostly women got very little attention from the research community. We may be just on the brink of creating that kind of community of people who care about lung cancer – thanks, in part, to newer treatments that help us live beyond our initial nihilism and feel well enough to take action.

The good news is that we don’t have to overcome stigma first and then fight for more research funding. People with AIDS proved that you can have a tremendous impact on medical research and health care even when the general public still wants you to drop dead.

The Lung Cancer Social Media community will be discussing lung cancer stigma this Thursday night at 8 pm Eastern time (5 pm Pacific). You can find out more here: http://lcsmchat.wordpress.com/2014/02/07/lcsm-chat-13-feb-2014-brainstorming-how-do-we-erase-the-stigma-of-lung-cancer/. Please join us! I’ve said my piece; I’ll be trying to mostly listen.

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A brief pause for research

There are all kinds of things I still want to blog about. A long list. I’m coming to the end of what I know just from being a patient, though. I thought I was going to keep blogging Monday through Friday, but now anytime I start a new post (I have a dozen drafts started!) I realize I want to do more serious research: read medical journal articles online, interview people, learn more than I can know from my experience alone.

If you have questions about my experience as a lung cancer patient, let me know in the comments. Perhaps there is more that I can share “off the top of my head” that is genuinely helpful! In the meantime, though, look for less frequent but (I hope) more informative posts.

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Living with lung cancer: Respect the fatigue

A friend who’d been through cancer and chemotherapy brought us gifts: a soft, fleecy blanket and a pillow for each of us. “Whenever you need a nap, take one,” she said. “These are to remind you.”

Ironically, we’d visited this same friend during her treatment and been surprised at how unavailable she was. She seemed to sleep half the day. Now, though, we understood. (We also felt terrible, in retrospect, for having shown up as a family of three house guests during that period — she reassured us that it had been nice to see us, but I would never do that to a person being treated for cancer again. I would stay in a hotel.)

Cancer saps your energy all by itself. There’s no way around it. I may have been dealing with cancer fatigue for months before I was diagnosed; I say “may” because I’d had a concussion the year before, so anytime I felt tired or needed extra sleep I just attributed it to lingering post-concussion syndrome.

Cancer treatment exacerbates cancer fatigue in what can feel like a thousand different ways. For me, it started with my hospitalization in December 2012. You don’t get much sleep in the hospital, and I was in for ten days. By the time I was released, I’d spent so much time in bed that just walking around exhausted me, and yet I was so adjusted to the hospital schedule of having my vitals checked at every shift change that I couldn’t sleep through the night at home.

During the weeks between diagnosis and treatment, my doctors had me take steroids as a stopgap measure. Falling asleep on steroids was next to impossible. Sometimes I just got up and read a book, or baked cookies, or did something else until 3 or 4 a.m.

Chemotherapy made it worse. I had hot flashes, especially at night; I’d feel hot all over and throw off all the blankets, and then, a few minutes later, I’d feel cold again. I was also scared. It’s hard to sleep when you’re scared. In addition, I took steroids for a few days before every chemo infusion. Sometimes I lay awake for hours and hours, only drifting off a little before dawn. So I was always tired all day.

For a while, even when my other symptoms improved and I was able to handle a certain amount of activity, I could not schedule anything before noon or 1 pm because of the strong possibility that I wouldn’t fall asleep before 5 am, and then wouldn’t be able to get up. My partner got our daughter dressed every day, packed her snack, and helped her get out the door to school.

I did manage to teach that semester, but this is how I did it: on teaching days, I stayed in bed all day, only getting up in the late afternoon. My colleagues picked me up and drove me to my evening class, and then drove me home. I didn’t try to do anything else on teaching days, and I pretty much rested all day the following day. (My doctors were great about helping me schedule infusions and tests to accommodate my teaching schedule.)

When I finally was able to get a decent night’s sleep again, at least most of the time (long after stopping chemotherapy, through a combination of medication, therapy, acupuncture, exercise, and time), I slept and slept. You can’t really “catch up” on lost sleep, or so I hear, but I did my best!

Even the healthiest, strongest lung cancer survivors I know, long-term survivors of Stage IV lung cancer who have been at this much longer than I have, experience disrupted sleep and fatigue. In all the lung cancer education and activism they do, they make sure to say not to call before a certain hour. If they’re thinking about attending a medical conference, they make sure they’ll be able to take rest breaks. You have to respect the fatigue.

Note: In keeping with the theme of respecting the fatigue, I’m cutting back my blogging from seven days a week to five. I’ll be posting new entries Monday through Friday, but not on the weekends.

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Three biopsies in eight months

In my first post, “Lung Cancer: What I Wish I’d Known in the First 72 Hours,” I said I wished I had known to ask the doctor to take extra tissue in the initial biopsy. It might have helped me avoid having two more biopsies in the next eight months.

I probably would have had the second biopsy anyway. My lungs had one substantial mass, and several patchy areas. After the first couple of rounds of chemo, my oncologist at Rutgers Cancer Institute of New Jersey became concerned that not only were my lungs not looking better on a CT scan, the patchy areas might actually be a little worse.

One of the questions was whether the patchy areas were even cancer. We knew that the mass was cancer because that was the area they biopsied the first time, but the patchy areas looked different enough from the mass that they could have been something else. My bronchoscopy results had included one weird finding, an unusual bacteria. I might have an infection, or I might simply be a carrier of something. The fact that the chemo didn’t seem to be having any effect on the patchy areas contributed to my oncologist’s concern.

Meanwhile, there had been enough tissue from my first biopsy, at a community hospital, to test for the three most common genetic mutations in adenocarcinoma: EGFR, ALK, and KRAS. I was negative for all three. All three of my oncologists had mentioned ROS1, and there was also a possibility I might be eligible for a Foundation Medicine study that would test my cancer cells for all other known mutations. However, there wasn’t enough tissue left for any additional mutation testing beyond the “big three.”

This was probably the most confusing moment in coordinating care between three centers PLUS the community hospital where I’d had my first biopsy. Bits of information went astray in the five-way communication (three cancer centers, one community hospital, and me, the patient). For a while, I actually thought the additional testing was underway when it wasn’t. I didn’t realize all the tissue from my first biopsy had been used up. Always ask ALL your doctors ALL the questions!

My oncologist at Memorial Sloan-Kettering agreed that we should biopsy the patchy areas, and the second biopsy might have the added benefit of giving us more tissue for further mutation testing. I decided to have this biopsy done at Memorial Sloan-Kettering because of all the centers where I was being seen, they had the most direct access to the widest variety of tests — and I knew they would keep track of my tissue and keep me posted if it got depleted! So I had a second biopsy in March 2013.

Unfortunately, because the patchy areas were, well, patchy, there weren’t enough cancer cells for extra testing from the second biopsy, either. They got enough cells to determine that yes, in fact, the patchy areas were also cancer, just like the mass, and the bacteria was probably a red herring and not important, but there weren’t enough cells left over to learn anything else.

Although my CT scans continued to look more or less the same every time, on chemo I was feeling incrementally better. My oncologist switched me from carboplatin, Taxol, and Avastin to pemetrexed (Alimta), and again there was no substantive change in the CT scans – they kept looking perhaps marginally worse, definitely no better – but my symptoms kept improving, bit by bit. ROS1 or some other genetic mutation seemed like such a remote possibility, and another biopsy seemed so invasive, that we decided to wait until there was a good reason to do a third biopsy, and not do a third biopsy just to get tissue for testing.

I ended up having a third biopsy in July 2013, again at Memorial Sloan-Kettering. This was to test for the PD-L1 protein and see if I might be eligible to take a PD-L1 inhibitor in a clinical trial. I felt reasonably OK on pemetrexed, but my scans were really not improving, and my oncologists wanted me to try something different. PD-1 and PD-L1 inhibitors are new drugs, still in trials and not on the market, that have shown great promise for activating the body’s own immune system to fight lung cancer. They are the hot new thing in thoracic oncology.

This time, we didn’t mess around. My Memorial Sloan-Kettering oncologist asked the interventional radiologist to take four cores: one for the PD-L1 test, one for the Foundation Medicine study and testing for ROS1 and RET, and two to save for future genetic testing that I might need for future clinical trials or that might become available down the road.

They didn’t find the PD-L1 protein, so I didn’t qualify for that trial. They did, however, to everyone’s surprise, find ROS1. We didn’t do the Foundation Medicine testing, because the genetic mutations are usually mutually exclusive; now that we knew I had ROS1, we didn’t have to go hunting for  others. The next direction for my treatment was now clear.

Seriously: if you’re having a biopsy anyway, ask them how many cores they can take. And afterwards keep track of where they are and how they are being used.

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“So, you’re cured? Or in remission?”

I recently attended an event where I saw a number of people I hadn’t seen in several years. Many hadn’t known I had cancer. When I tried to explain, my story didn’t always seem to compute.

“So you’re all better now?” I’m doing very well on a new medication, and I feel good.

“It must feel great to have that behind you now.” They say that people who respond well to this medication get, on average, about a year of good health, and then the cancer develops resistance to it. I might get more than that.

“So you’re in remission?” No. The cancer in the part of my lung they are tracking for a study is reduced by 83 percent, but I still have cancer.

There are a few visible clues to the serious disease I still have: the short hair, the port in my chest and the tiny scar over it. But I’m able to travel, to speak in public, to keep forging ahead with my academic work. I have very few side effects from crizotinib.

It’s good news, right? I didn’t know I would still be alive now, but I am doing so well that you wouldn’t know I had cancer.

It’s very disorienting, though. The cancer is almost invisible, but it’s still pretty much the defining experience of my life.

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Patient engagement: a powerful tool with a powerful history

“Patient engagement” is a relatively recent term for patients becoming actively involved in their health care experience by educating themselves and working together with their doctors to make health care decisions. Sometimes it’s used as a buzzword to simply mean patients complying with what their doctors tell them to do. Among health care activists and advocates, though, it means patients actually working as partners with health care professionals. If you’re asking your doctor about genetic testing, if you’re reading blogs and visiting websites to figure out what you should know about lung cancer besides what your doctor has told you, or if you’re looking into clinical trials and making choices about them, you are an engaged patient.

You might hear the term “participatory medicine,” coined by Gilles Frydman (see http://participatorymedicine.org/). You might also hear the term “e-patient”: Tom Ferguson, MD, coined this term to describe patients who are “equipped, enabled, empowered, and engaged” in their own health and health care. (Also, the “e-” prefix, reminiscent of “e-mail,” intentionally connotes engaged patients’ use of the Internet to learn as much as they can and connect with one another).

Dave deBronkart, who calls himself “e-patient Dave,” has given a very moving and popular TEDx talk on patient engagement, “Let Patients Help” (see below) and has written a useful handbook by the same title (http://www.epatientdave.com/books/).

Patient engagement and participatory medicine are, of course, not really new at all. DeBronkart gives credit to “hippies” (he was one himself, and Tom Ferguson was the medical editor of the best-selling Whole Earth Catalog in the 1960s and 1970s). Patient engagement also owes a tremendous debt to the women’s health movement of the 1970s and 1980s, and the AIDS movement of the 1980s and 1990s. It was women’s health activists who first disseminated information about gynecological health for a lay audience, insisting that women had a right to be full partners with their doctors in making decisions about their bodies. It was AIDS activists who campaigned for, and won (among many other victories) the public database of clinical trials that has evolved into http://www.clinicaltrials.gov.

Conversations about lung cancer on patient engagement websites and in the #lcsm (Lung Cancer Social Media) tweetchats actually remind me a great deal of conversations about AIDS with ACT UP New York’s Treatment and Data Committee and its spinoff group Treatment Action Group in the 1990s. I used to be stunned, on an almost daily basis, at the scientific information non-scientists could understand and explain when their lives depended upon it.

Today, these conversations are happening online, using technology that barely existed 20 years ago, instead of face-to-face. This is a huge difference: it means that patients with rare diseases (or, say, common diseases with rare genetic mutations, like my own ROS1) can find one another and share resources, even if they don’t live anywhere near each other. When ACT UP people get together these days, we often say, “Imagine what we could have done if we’d had the Internet!” We usually mean we could have planned demonstrations to turn on a dime – but we could have helped a lot more people understand the newest AIDS research as well.

(There are other major differences, too, of course. ACT UP was rooted in vibrant queer urban subcultures, and joyously celebrated queer lives in a time when much of the country didn’t care if gay people died. ACT UP also had a strong social critique of the racial, economic, and gender inequities of the health care system, which so far I don’t really see among “e-patients”; some of us can be a little ignorant of how difficult it might be for a poor single mother with lung cancer to find the leisure time to explore clinical trials online.)

Here are some online history resources would-be “e-patients” may find inspiring:

I also highly recommend the following films: Jim Hubbard and Sarah Schulman’s United In Anger: A History of ACT UP (Los Angeles: The Film Collaborative, 2012), http://www.unitedinanger.com/ and David France’s How To Survive A Plague (New York: Sundance Selects: MPI Media Group, 2013), http://surviveaplague.com/. It’s a little easier to get your hands on How To Survive A Plague, but check academic libraries for United In Anger.

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