“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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A chart of genetic mutations in adenocarcinoma*

A friend of mine, reading Paul Kalanithi’s beautiful piece about living with lung cancer in this past Sunday’s New York Times, asked if Kalanithi has the same mutation I have. He takes a pill that targets his specific genetic mutation, and he’s gotten well enough to go back to work, just like me. How many mutations like that can there possibly be?

Several, actually. People with non-small cell lung cancer that has the EGFR or ALK mutation, much more common than mine, can also do very well on targeted therapies for a substantial period of time. I don’t know as much about the other rare ones, but I do know that new targeted therapies are emerging all the time.

Another ROS1 blogger, Tori Tomalia, has posted this chart of genetic mutations in lung cancer. She writes, “See that tiny little pink sliver at 1%? That’s my tumor’s mutation!” Mine, too.

Molecular Mutations in Non-Small Cell Lung Cancer
Source: Targeting Tumors Early: Trials Push Novel Agents to Forefront

Here is a link to Tori’s whole post: http://lil-lytnin.blogspot.com/2013/11/knowledge-is-power.html. The link on the chart takes you to a very informative article, too.

The big problem with targeted therapies is that cancer continues to develop new mutations over time, and eventually outsmarts the targeted drugs. These therapies buy us great health, but not forever. The next challenge, even while other mutations continue to be discovered, is to figure out how to keep the cancer from developing resistance to the targeted medicines. There’s also great promise in studies that offer targeted therapy for early-stage lung cancer.

*The original title of this post, “A chart of genetic mutations in lung cancer,” was inaccurate. This is a chart of genetic mutations in adenocarcinoma of the lung, one type of lung cancer. About 40 percent of all lung cancers are adenocarcinomas. I’m grateful to David Tom Cooke, M.D., a thoracic surgeon at UC Davis Health Center, for pointing this out.

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Lung cancer in 140 characters: finding your people on Twitter

You might have trouble finding a lung cancer support group in your community. However, the Internet makes it possible to find people with lung cancer all over the world who are engaged in critical thinking about their own treatment, and who are advocates for better screening and care. You never have to be alone; even at 3 a.m., someone, somewhere, is also up worrying about their lung cancer and willing to virtually commiserate.

It will take several posts to explain various ways to connect online, but I’d like to start with Twitter. Many people don’t understand Twitter, or think it’s just for gossip about celebrities. It can be confusing, especially if, like me, you grew up in an analog world. However, it’s actually ideal for helping people with lung cancer and our advocates find and support one another.

I discovered the usefulness of Twitter in 2011 during Hurricane Irene, when I realized it was the best way to get weather information during a power outage. Information often shows up on Twitter before it appears anywhere else. Unlike Facebook, it refreshes quickly, and doesn’t devour the battery power in a smartphone. Lung cancer is not unlike a weather emergency: you may want information when wireless service is nonexistent or uncertain (say, on the train or in your doctor’s office), and you may want your information digested into 140-character “headlines” because you don’t have the time or energy for long or dense pieces of writing.

When you join Twitter, your first task is to select a few people to “follow.” This will give you a customized news feed.  To start, I recommend following these people and groups:

  • @LungCancerFaces (Faces of Lung Cancer). The person behind Faces of Lung Cancer is Deana Hendrickson, whose  mother died of lung cancer. Even if you only use Twitter to read Deana’s tweets and not for anything else, it is incredible what you will learn. Through Deana, you will eventually meet engaged patients, doctors, nurses, social workers, and more. Introduce yourself to Deana or “retweet” one of her Tweets, and she will invite you to be part of lung cancer “tweetchats” in which all kinds of people who care about lung cancer discuss important issues via Twitter. The tweetchats can be difficult to follow at first (everyone is “talking” at once, and the scientific terms come fast and furious) but are also exhilarating.
  • @TeamInspire, @cancerGRACE, and @smartPatients. These are the Twitter accounts of three online communities dedicated to “patient engagement,” or self-education and self-advocacy by people with serious illnesses. All three encompass smart, substantial communities of lung cancer patients and caregivers.
  • @JackWestMD, (Howard Jack West, MD), a thoracic oncologist at Seattle’s Swedish Cancer Institute and the founder and president of cancerGRACE. He tweets all kinds of links to current research, as well as the occasional funny quip about parenting.
  • Your hospitals or cancer centers probably have Twitter accounts, and these can be fun and informative to follow. I like knowing what initiatives my cancer centers are promoting; plus, I’m always entertained when, on a clinic day at Memorial Sloan-Kettering, I tweet about the slow elevators or my hectic commute, and Memorial Sloan-Kettering tweets back: “Hi, Beth! We’re working on the elevators. Hope you are feeling good today.”

I follow many people involved in lung cancer research, education, and care, but this handful of accounts is where I would recommend starting. Many of my relationships on Twitter are specialized to my particular situation (for example, I especially follow women with the ROS1 mutation, which I have). You can follow me if you want, at @IEStroud – I also tweet about graduate school, race and gender issues, and religion. You’ll gradually find folks who inform, inspire, and entertain you; some may become your friends.

You don’t even have to tweet; it’s possible to use Twitter as a running ticker of headline news that you simply read. If you do tweet, upload a picture and create a profile with a few words about yourself so that people know you’re a real person and not a robot, and remember that everything you post on Twitter is potentially visible to the entire world. The public nature of Twitter is great because it helps you meet new people who share your interests, but there are also risks, so wade in slowly! If you tweet about lung cancer, use the hashtag “lcsm,” which stands for “lung cancer social media.” This way, other people who are interested in lung cancer will see your tweets and perhaps reply.

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When your friend has cancer

People often ask what they can do to help. While friends have done some truly spectacular things for me since my diagnosis, some of the most important and helpful things have been very small and simple. I figure everyone knows about hot meals and handmade hats, but here are some other small acts of kindness that have made an enormous difference to me. If the things on this list sound helpful to you, pass it on to your friends.

All friends:

  • Respect the fatigue. Cancer and treatment take a toll on energy, so your friend probably has fewer waking hours in the day than previously. If your friend is using CaringBridge or a similar tool to keep loved ones posted on his or her progress, use it instead of asking your friend to repeat the same medical updates over and over. When you visit, understand that your friend may need to sleep late, go to bed early, and nap. To stay in touch, choose e-mail, text messaging, and mail over phone calls whenever possible because these allow your friend to read and respond when he or she is up for it.
  • Do something nice for her family. Cancer overwhelms children and caregivers, too. Take your friend’s spouse out for lunch or a drink. Send the children mail – children love getting mail! While I was going through chemo, a friend in California sent my daughter a little package of hair bows or other shiny things every couple of weeks. It was great for her to have this special attention when I wasn’t able to take her for outings or treats.
  • Listen. Let your friend say (or write, or text) whatever is on his or her mind, and don’t discuss what you hear with anyone. I value a small group of friends I call my “Snark Patrol”: I text them when I am irritated or impatient, when someone sends me a well-meaning but grossly inappropriate card or gift, or when yet another person says, “Lung cancer? Did you smoke?” They make me laugh so hard that I feel better. And I know I can trust them not to broadcast my irritation and hurt other people’s feelings.

Friends who live far away, or can’t visit:

  • Send a card (or a text, or an email). I know a lot of folks wish they could do more than “just” send a card, but do they even realize how nice it is to get a card in the mail when you don’t feel good? It doesn’t have to say much – in fact, less is often more. A pretty picture and “I’m thinking of you” is all that’s necessary.
  • Send money. I cried when I opened the card that had $100 in it, and a little note that said, essentially, “Spend this on the vending machines or cafeteria in the hospital, extra little supplies from the drug store, gas for the car, or whatever you need.”

Friends who live nearby or can come visit:

  • Clean up the kitchen. If your friend has nausea from chemo, a sink of dirty dishes may be an insurmountable obstacle. Just the sight and smell of the food on the dishes can trigger vomiting. I loved the friends who just rolled up their sleeves, did the dishes, and wiped the counters anytime they were in the house. Especially if they made educated guesses about where to put things, and didn’t ask me exactly where everything went. (Ask first, of course. Other people are pickier and more sensitive about their kitchens than I am.)
  • Take care of the pets. Our next-door neighbors took our dog for a walk every night for about six months. Others helped with vet appointments. Keeping up with a pet’s shots or grooming may be more than a family can manage while dealing with cancer. Even if you’re just visiting for the afternoon, ask if you can take the dog for a walk.
  • Offer child care. The day we went to New York to meet with the surgeon, we dropped our daughter off with a friend whose kids are near her age and go to the same school. She greeted us at the door in her pajamas, fed our daughter breakfast and got her to school, helped her with homework and fed her dinner, and kept her until we could pick her up late in the evening. That was a horrible day, but I still remember the comfort of knowing our daughter was having as normal a day as possible.

I hope other cancer survivors will add more ideas in the comments! What thoughtful and helpful things did your friends do for you?

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Beautiful piece from The New York Times: “How long have I got left?”

I was going to finish writing something new this morning, but nothing I could write today could possibly be as beautiful or thoughtful as Paul Kalinithi’s piece in tomorrow’s New York Times. Kalinithi is a chief resident in neurosurgery at Stanford University living with lung cancer. Some of his questions about cancer, time, and career mirror mine as a doctoral student in the humanities. When my life’s work requires such a long-term time investment, how do I deal with a diagnosis that makes the time so short and uncertain?

Kalinithi writes, “I began to realize that coming face to face with my own mortality, in a sense, had changed both nothing and everything. Before my cancer was diagnosed, I knew that someday I would die, but I didn’t know when. After the diagnosis, I knew that someday I would die, but I didn’t know when. But now I knew it acutely. The problem wasn’t really a scientific one. The fact of death is unsettling. Yet there is no other way to live.”

http://www.nytimes.com/2014/01/25/opinion/sunday/how-long-have-i-got-left.html?_r=0

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Lung cancer tips: Keeping track of meds

Lung cancer tips: Keeping track of meds

Here are some low-tech devices every lung cancer patient needs. The big pill box is for each day’s morning and evening pills. Right now, in the mornings I take crizotinib (Xalkori), Chinese herbs, a reflux medication, and a multivitamin, plus some Vitamin D from a spray pump; in the evenings, crizotinib and Chinese herbs. This is the fewest medications I’ve been on in a year.

All days are not the same in cancer treatment: you may have extra steroids to take for a few days leading up to chemo. If you are in a clinical trial, you may have to remember NOT to take your trial medication on clinic day because they need to run blood tests before and after you take it. So I like to count out everything by the day.

If you have young children or grandchildren, keep this box all the way out of reach at all times, preferably in a lockbox — these compartments are not child-resistant the way pill bottles often are.

The small box is for medications you carry with you. Actually, I have two. In one, I always keep one morning’s medications, for when I am already out for the day and realize I forgot to take them, or when I am leaving home early in the morning (I try to take the morning medications between 8 and 9 every day). In the other, I keep a few tablets each of my as-needed medications. That way, if I’m out and about and suddenly develop nausea or a migraine, I’m prepared. If you have small children or grandchildren, you may not want to do this because it’s hard to always keep a purse or backpack out of reach.

In addition, I use a smartphone app to keep track of all medications. I used MedTracker for a long time; now I like Easy Pill because the interface is simpler (and less ugly). It sends me an alert when it’s time to take a medication, and I can check off both scheduled and as-needed medications when I take them. I have to fill out a four-week pill diary for the clinical trial, but it’s often easier to keep the record in my phone and transfer it to the pill diary after the fact.

The phone apps also help with one other important thing: every doctor you see will need to know every medication, herb, vitamin, and nutritional supplement you are taking, and will need the list updated every time. At first I kept a running list in Google Docs; when there were more medications, it was easier just to print it out and bring it to medical appointments than to fill out the forms at the doctor’s office. Lately I find it easier to refer to my phone — and by now I basically know my medication list by heart anyhow.

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PSA: If you have lung cancer, don’t dig out this car.

PSA: If you have lung cancer, don't dig out this car.

I mean it. No matter how well you are doing on targeted therapy. No matter how long your lungs have sounded beautiful and clear. No matter how light and fluffy you think the snow is. Let someone help you.

Also: Please wear a scarf.

I’m fine, by the way. Just realizing it was a stupid thing to do.

(Some of my doctors read this blog. I hope they don’t kill me.)

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Lung cancer tips: My handy pocket pulse oximeter

When I was discharged from the hospital in December 2012, my oxygen levels were still kind of low. They were high enough for me to go home without oxygen, but definitely still below normal. I was worried about that. Some friends bought me this pocket pulse oximeter:

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I clip it on my finger, press the white button, wait a few minutes, and presto! It shows my oxygen saturation and my heart rate.

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(99 percent is normal. I’m proud of that heart rate, too. For an overweight middle-aged lady with lung cancer, I have a great heart rate and very good blood pressure.)

The pulmonologists at the hospital weren’t nuts about the idea. They said they got a lot of phone calls in the middle of the night from patients who were fine, but were getting worrisome readings on cheap, inaccurate pulse oximeters. Well, it’s certainly true that you can accidentally look at it upside down and get very worried.

I find it very reassuring, though. As I got my strength back after the hospital, I could see how my body was tolerating exercise. I liked seeing the numbers gradually improve. The pulmonologist I see as an outpatient checked my little pocket meter against the expensive equipment in her office, and said it was actually pretty accurate.

 

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Finding lung cancer in young nonsmokers: some thoughts on screening

As of this year, for the first time ever, national guidelines exist for screening people at the highest risk for lung cancer. The U.S. Preventive Services Task Force now recommends that people from 55 to 80 years old with a history of heavy smoking receive a low-dose CT scan every year. The details of the recommendation are here: http://www.uspreventiveservicestaskforce.org/uspstf/uspslung.htm

That screening guideline would not have helped me. I’m not 55, I barely tried two cigarettes in my teens, and in early imaging studies my cancer didn’t even look like cancer (on an X-ray, apparently, it looked like pneumonia).

Lung cancer is often curable with surgery at early stages, but is rarely detected early. Who knows how long the cancer was quietly growing in my lungs before I was finally diagnosed? Perhaps it could have been removed surgically and would never have recurred.

Some lung cancer advocates would like to see broader access to low-dose CT scan screening, to detect cancer earlier in younger, non-smoking patients like me. I’m not convinced that lung cancer is common enough in nonsmokers under 55 to justify universal CT scans. There are risks in being exposed to radiation, and universal CT scans might cause as many problems as they solved.

We might be better served by a lung cancer education campaign like the U.K.’s “Be Clear On Cancer” lung cancer campaign last summer. That campaign encouraged people to go to the doctor if they had a persistent cough. For more about this campaign, see http://www.bbc.co.uk/news/health-25257135

My earliest definite symptom was a strange, raspy sound when I took a very deep breath. I started hearing it in May of 2013. It wasn’t very loud; it was actually quite subtle. My partner could hear it by listening very closely. For the most part, no one would have noticed it but me. I also had an on-again, off-again cough and some fatigue. Doctors at my primary-care clinic thought I had bronchitis, and gave me antibiotics. I still heard the funny sound and was still very tired, but thought I was mostly better and maybe it was “just” asthma.

In October, at the suggestion of a close relative, I went to the doctor again for the breathing sound and this time the diagnosis was walking pneumonia. My oxygen saturation was a little low, and my cough got worse again. When antibiotics and steroids didn’t clear things up, they sent me to a pulmonologist. The pulmonologist would have sent me for a bronchoscopy in January if things didn’t clear up, but in late December I went into the hospital with shortness of breath and they did the bronchoscopy then.

What if I’d pursued the cause of that funny breathing sound more aggressively? What if my doctors had told me early on that lung cancer was a possible explanation, however remote? I would have been terrified, of course, but I might have been more aggressive in pursuing follow-up care. I also wonder about my “adult onset asthma,” a diagnosis I received in my thirties. What if that was never asthma at all, but sneaky, slow-growing lung cancer — and what if I’d had a CT scan or a bronchoscopy then? Perhaps the best early detection program for younger people is simply more education that nonsmokers under 55 can and do get lung cancer, so we can all be more aggressive, patients and primary doctors alike, when we see possible symptoms.

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