Last week, I presented a talk titled “Patient-Directed Innovation, Research and Clinical Trials” at the IASLC’s World Conference on Lung Cancer (WCLC). Originally, I was supposed to present this live in Singapore last August, but due to the pandemic, the conference was postponed and then held virtually last week.

The IASLC’s WCLC is the largest annual conference on lung cancer, with thousands of attendees. I spoke in the first plenary session, in a group with 4 other presenters, all researchers, and after our 20 min. presentations, we held a live group Q&A session. It’s great progress that IASLC now includes patient presentations in plenary sessions. When I spoke at this conference in Tokyo in 2017, I was placed into the “advocacy track,” which most doctors skip. My discussion in the more visible plenary session was the first time hundreds of oncologists heard about the importance and value patient-directed research can bring to the table. 

For those who are interested, it’s possible to see my talk and the follow-up panel discussion on the website https://wclc2020.iaslc.org/ (requires paid registration, but the fee is waived for patients). My slide deck. I’ve also included the abstract below:

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Abstract

PL02.06 Patient-Directed Innovation, Research and Clinical Trials , L. Goldman,  The ROS1ders, Inc., Mountain View/CA/US 

Thanks in large part to breakthroughs in biomarker testing and targeted therapy, many patients with advanced lung cancer are surviving longer. This extended survival period has enabled lung cancer patients to play a more impactful role in influencing innovation, research and clinical trials to further improve their outcomes. 

One of the most obvious vehicles for patient-driven innovation has been biomarker patient groups. In 2015, a handful of ROS1+ patients formed the first biomarker patient group. Since then, many more patient-led oncogene groups have arisen. Besides The ROS1ders, there are now groups named ALK Positive, Exon 20 Group, EGFR Resisters, RET Renegades, ALK Fusion, KRAS Kickers, NTRKers, MET Crusaders and BRAF Bombers. These groups offer peer-to-peer support, typical of traditional cancer patient support groups. But, they also extend their reach into areas such as patient education, access to effective treatments and trials, and accelerating research — all highly focused on the specifics of each oncogene. 

Although each patient group is highly focused on its own oncogene, the groups share similar priorities and motivations. All of these groups strive to add meaningful patient voices to the world of cancer innovation (beyond the historical patient role of passively participating in trials). Patient groups are now developing relationships and partnerships with researchers, clinicians, pharmaceutical companies, and other advocacy organizations to help address previously unmet patient needs. 

In addition to adding their voice to the cancer innovation conversation, patient groups have valuable contributions to make. Patient groups often represent the largest collection of people with any given biomarker (greater than even the biggest clinical trials). As such, these populations can offer rich pools from which to collect specimen donations, gather survey data, recruit for clinical trial participation, execute registries, and more. They also offer a unique opportunity to generate “real world evidence” that can be highly useful for purposes such as making regulatory decisions about drug safety and effectiveness, supporting coverage decisions, developing clinical guidelines, informing clinical trial designs and developing new studies.

In 2016, The ROS1ders launched their first foray into patient-directed innovation. They worked with the Addario Lung Cancer Foundation (now GO2 Foundation for Lung Cancer) and Stanford University to survey and collect data from the largest group of ROS1+ patients ever assembled. As with all new endeavors, there was a steep learning curve to this shift in approach from viewing patients as passive study participants to active partners. While still a valuable effort, unfortunately, much of the data ended up siloed within the research institution, inaccessible to the patients and others. In 2017, The ROS1ders launched their second research-focused effort, “The ROS1 Cancer Model Project.” In this project, patients donated both funds and biospecimens. A collaboration with a researcher at University at Colorado through one arm of the study resulted in the creation of 9 new cell lines. These cell lines are allowing scientists to learn more about ROS1+ tumor biology, investigate resistance mechanisms and develop better biomarker tests. Learning from their first experience, in this second project, The ROS1ders placed more emphasis on sharing research information to accelerate progress and avoid silos. This dynamic of building trust, communication and partnership between the patient groups and scientists represents a meaningful paradigm shift in the world of cancer research that benefits both groups. 

Following the example of The ROS1ders, the EGFR Resisters group has also executed significant patient-directed research. In 2018, they partnered with the LUNGevity Foundation on Project PRIORITY, a quantitative, IRB-approved, international survey, developed with input from patients, caregivers, clinicians and regulators. After surveying 350 participants in the largest ever real-world study of EGFR+ lung cancer, Project PRIORITY produced valuable information about demographics, risk factors, diagnosis and treatment, and the psychosocial impact of an EGFR+ diagnosis. This information differed from traditional clinical trial data because it included real-world patients who are often excluded due to factors such as brain mets, prior cancers or poor performance status. As a result, this patient-driven project revealed new insights into the EGFR+ population, which will influence future research. 

Beyond large projects like the ROS1 Cancer Model Project, or EGFR Project PRIORITY, patient groups can also contribute in other ways. One example of a useful, albeit less formal, activity is collecting data from informal surveys within a Facebook group. This data can help give researchers quick feedback about areas that might (or might not) benefit from further study before investing extensive resources. Another example are patient-organized research summits that offer unique opportunities to young investigators to present their research, collaborate and receive mentorship from established experts. This creates a mutually beneficial environment where junior faculty receive support, while the patient groups are able to motivate and inspire interest in their specific oncogene. A third example is having patient groups partner with a CME to provide education during events such as nursing symposiums or ASCO poster walks, helping to introduce the patient perspective in ways seldom done previously. Of course, patient groups can also impact innovation and research by traditional fundraising efforts. Most recently, both ALK Positive and Exon 20 Group raised money to offer grants to those involved in research related to their oncogenes. Other patient groups are following suit. These patient funded grants are the result of patients who have been highly motivated by direct communications and relationships built with the researchers. 

As the rapid proliferation of patient biomarker groups suggests: patient-directed innovation is swiftly becoming an integral part of the landscape of cancer research. This is good news. Paradigm shifts such as this can involve growing pains as we all learn how to navigate new practices, but the benefits are worthwhile. Granting patients a seat at the table allows them to better understand both the possibilities and limitations of research and how they can best help. Simultaneously, including the patient voice allows researchers to understand and work on issues that are important and meaningful to patients. Patient involvement provides fertile ground for win-win opportunities, and as such patient-directed innovation appears not only to be here to stay, but primed to grow in the coming years.

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I couldn’t find a good image capturing the subject of this post, so here’s my cat, raucously celebrating LCAM. Doesn’t her enthusiasm jump off the page?

Today is the last day of Lung Cancer Awareness Month for 2019. I have neglected to blog about it this year, I think I never quite recovered from posting a memorial per day for every day in November back in 2017. 

Luckily, other folks have got my back. Although we still have a long way to go to overcome the smoking stigma, there’s more and more good content out there for LCAM. Here are some of my favorite links of the month:

1. NBC’s Today show featured awesome veteran LC advocate, Jill Feldman. This is the first time a national news show has featured a story about a lung cancer patient for LCAM – huge milestone! Journalist Kate Snow and my friend Jill did a fabulous job. Please check it out: https://www.today.com/health/what-are-signs-lung-cancer-nonsmoker-diagnosed-disease-fights-stigma-t167097
2.  Linnea Olsen, whom some of us affectionately refer to as the “OG” of lung cancer activists, did an important TED talk: https://www.wgbh.org/tedxbeacon?fbclid=IwAR1YvOWLAF1kevUi1LrbDjt0wDXczOX0kBo4rmuFzgtwF9j2SBEIMItj0VE (she starts at about 2:38)
3. Ivy Elkins took the words out of my mouth with this short, but excellent article summarizing the top 5 things everyone should know about lung cancer. Please read and share: https://lungcancer.net/living/wish-people-knew/?fbclid=IwAR2Didbe16d09e-LqHCNmXkqtWXZuye3_80oz4NSHEreXwIKnyNOEH6_4oo
4. I’m cheating a little bit, because this was published in late October, not November, but this is a great (very readable) piece about the ROS1ders, featuring Tori Tomalia and Merel Hennink, titled “ROS1 Cancer Model Project Demonstrates the Power of Patient Advocacy”: https://www.precisiononcologynews.com/cancer/ros1-cancer-model-project-demonstrates-power-patient-advocacy?utm_source=addthis_shares&fbclid=IwAR24w2WuLWbtjGzuf_g8tdQl4e44vNXx_9Lx-hHew5rr8YdNN9uBZGjkoV8#.Xc5HkzJKgU3
5. Janet Freeman-Daily posted a useful blog about radon and lung cancer. I do not believe radon caused my lung cancer, and it kind of irks me when people immediately jump from “if it wasn’t smoking, it must have been radon,” because I believe that’s a symptom of the stigmatization of lung cancer – the need to always place blame, rather than accept that sometimes it just happens, just like every other type of cancer. That said, radon is more commonplace and dangerous than many realize, and the tools to detect and remediate are quite simple and worthwhile. To protect yourselves and your loved ones, please find out more here: https://grayconnections.net/2019/11/15/do-you-have-the-2nd-biggest-cause-of-lungcancer-in-your-home/
6. I’m cheating again. These are two older, but popular, blog posts I wrote for LCAM back in 2014, and unfortunately, they’re still quite relevant. If you missed them the first time around, please check out: Lungs, They’re Right Under Your Boobs, and Go Ahead, (and ask me if I smoked) … Make My Day.  
7. Finally, if you are moved to contribute to lung cancer research, I am still fundraising here and hoping to raise another $1k in 2019 (Giving Tuesday, anyone? – thank you in advance!!): https://www.supportalcf.org/ros1/lisagoldman

As your reward for getting to the end of this post (and to counterbalance my bitchy cat), I offer you an adorable pup in teeny tiny chucks.

The post Lung Cancer Awareness Month – Link Love appeared first on Every Breath I Take.

Photo by Lorraine Santana

Last week, I got a message out of the blue from an acquaintance:

“Lisa – I just wanted to send you a note of thanks for sharing your experience and being so open. I went to get a chest X-ray this week because I’ve had a persistent cough for a couple of months, and I was tired of the doctors blowing it off. Remembering your story, I insisted that they do the X-ray. It turns out they found some abnormalities and have done a number of follow up tests. Nothing definitive yet, but there appear to be some issues that I’m going to need to take care of. The good news is that it seems very early, so it seems likely it’s something that can be dealt with effectively. I wouldn’t have been so insistent if you had not shared your story, and this might have turned out differently. So, thank you for all that you’ve shared. I won’t ever be able to repay that. But know that I will forever remember it.”  

Whoa. I read the message aloud to Eric and we both got a little misty eyed. If you’re lucky, every once in awhile you get a sign that you’re accomplishing something you set out to do. In my “line of work,” that often means a bad news/good news situation. Unfortunately, I now have yet another friend dealing with illness. But, it is gratifying to know that all my prattling on here isn’t (just) self-indulgent navel gazing. Sharing our stories matters.

I do want to take a moment to clarify one thing. If you have a cough that persists for more than a few weeks (that the doctors can’t explain and hasn’t responded to typical treatments), ask your doctor for a low-dose CT scan, rather than an X-ray. My friend above got very lucky that their abnormalities showed up on an X-ray, but X-rays can commonly miss lung cancer. Recall that I had a lung X-ray that looked clear when I was already symptomatic–only 10 weeks before receiving the Stage IV diagnosis. The CT scan I received at the time of diagnosis revealed widespread cancer in both of my lungs, cancer that had been present but invisible on the earlier X-ray. CT scans allow doctors to see all the way through the lungs, rather than just the surface. If your doctor insists that you do an X-ray first, fine. But, if that X-ray looks clear and you still have unexplained symptoms, push hard to get a CT (a low-dose CT is fine). Do not accept anything less.

Thank you to my friend for sharing this story with me and further allowing me to share it here. I am so glad that you appear to have caught something early, and that I may have played a small part of helping you to do that. Now, together we can help many others realize that none of us is safe. Lung cancer is a risk for anyone with lungs. Everyone needs to hear the message: If you have risk factors or possible symptoms of lung cancer, get a low-dose CT scan.

The post Reminder: Anyone With Lungs Can Get Lung Cancer appeared first on Every Breath I Take.

• The Problem – ROS1+ cancer occurs in many types of cancers, but it is rare. This makes it difficult for any single research center to collect enough patient samples to study, which in turn suppresses the development of treatment options for this aggressive disease.
• The Proposed Solution – Three years ago, Janet Freeman-Daily, Tori Tomalia and I realized that ROS1+ patients (“ROS1ders”) held the power to accelerate research of their disease in ways no one else could. We set out on an ambitious goal to gather ROS1+ patients and their biospecimens for research.

With the support of the phenomenal Addario Lung Cancer Foundation and ALCMI, and many months of work by a team of dedicated patients, advocates, scientists and industry partners, we launched the groundbreaking ROS1 Cancer Model Project. (You can read more details about collecting ROS1+ biospecimens for this project here.)

And now, onto the News!:

• The Initial Results – While we were thrilled to have launched the project, we held our breath. The chasm between a great idea and effective implementation can sometimes disappoint (I live in the Silicon Valley, and count myself among the thousands of alumni of companies that failed to achieve their potential, sigh).

In this case, I have wonderful news to share. We are pleased to report that our ROS1 Cancer Model Project IS making a difference in ROS1 cancer research! Since January 2017, we have:

–> Received 10 fresh/fluid samples from ROS1der patients

–> Successfully derived 4 cell lines, with 2 more pending (to put this in perspective, this more than doubles the number of ROS1 cell lines that were known to exist in the world prior to this effort)

–> Distributed ROS1 cell lines to multiple industry/academic partners, including UCSF, U. of Utah, Moffitt, CC, McGill U., NIH, and Ignyta/Roche

–> Whole exome sequencing (WES) and RNA sequencing pending on both cell lines and tumor samples

–> Two patients enrolled in, and two specimens received, for implantation into Patient-derived xenografts (PDX) mice

–> Two PDX models in development to be genomically characterized and banked as a resource for research.

A few weeks ago, Janet met with Dr. Doebele at University of Colorado, one of the MD/PhD researchers working on the ROS1 Cancer Model Project. Janet toured Dr. Doebele’s lab and took a few photos:

In this image, gloved hands are holding a ROS1 cell line created from a ROS1der-donated specimen.

(Right) This image shows a researcher testing different concentrations of drugs against ROS1+ cell lines which have become resistant to the drug Crizotinib/Xalkori. Crizotinib is the only FDA-approved drug to treat ROS1+ cancer. It has a median effective time of approximately 18 months for ROS1+ patients. Once a patient’s cancer becomes resistant to Crizotinib, they have very few alternative treatment options. This research is a crucial step in developing more treatments for ROS1+ cancers.

This is what one of our cell lines looks like under a microscope.

• The Future – There are more cell lines and PDX models in the works. We are just getting started and we hope to have more exciting updates to share with you in the future. As Dr. Doebele said at the World Lung Cancer Conference in Toronto last week, “The oncogene-driven patient groups are positioned to make a huge difference in these rare lung cancers; for ROS1-positive cancers, the ROS1 Cancer Model Project is essential for supporting ongoing research into the biology, testing, and drug development for the disease.”
• How You Can Help –

For ROS1ders: The more biospecimens we patients donate, the better the research will be for all of us. We only accept donations of excess material collected in the normal course of a patient’s treatment, and which the patient does not otherwise need for their own care. To learn more about how you can contribute your tissue or pleural fluid to make more ROS1+ cancer models, call Nurse Alicia toll free at 866-988-ROS1 (866-988-7671).

For ROS1der supporters: We’ve been so focused on the logistics of launching this project, we are woefully behind on fundraising. If you’d like to help fund this research, please donate at https://www.supportalcf.org/ros1.

THANK YOU!

The post The Latest News about the ROS1 Cancer Model Project (Spoiler: it’s Good!) appeared first on Every Breath I Take.

If you want to help, spread the word, help us dismantle the stigma and perhaps consider donating to a cause that supports lung cancer *research* (if you need a suggestion, here’s my favorite: https://www.supportalcf.org/lisagoldman )

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November 1: Today I am kicking this off with the first person I knew who died of lung cancer. Her name was Jen Bulik Lang. She died at age 35, 10 months after her diagnosis, and less than 3 months after marrying her love Jeffrey Lang. I think of her often.

Jen Bulik-Lang

November 2: Today, I remember Stuart Grief. He was a smart, kind, funny man dedicated to the people and causes he cared about. He was such a loving husband and father. He was a fellow ROS1der, part of our initial patient leadership team, and I consider myself lucky to have known him. He was 55, and died less than 2 years after his diagnosis. His death hit me like a ton of bricks and left a permanent bruise on my heart.

Stuart Grief & Amy Lee Grief

November 3: This is Susie Klein. She died last year, at age 60, 9 mos. after her diagnosis. I got to know her through her son Adam Klein, who spoke of her during his season on Survivor and launched a LiveLikeSusie campaign (https://www.youcaring.com/lung-cancer-research-nonprofit-tbd-572269). I feel connected to Susie because we were both fitness instructors and Survivor fans raising game-loving little mensches in the Silicon Valley. I cried during the Survivor finale show when Adam told of how he flew home and made it to her bedside just hours before she passed.

Susie Klein

November 4:This is Elizabeth Dessureault. She was diagnosed at age 26 while 5 mos. pregnant with the baby you see in her arms here. She died less than 2 years later at age 27. Lizzie was an enthusiastic advocate and fellow ROS1der, active in our ROS1+ community. She beamed positivity and was a beacon for many. Her passing rocked the LC community earlier this year. In honor of LCAM, her mother is selling Lizzie’s Just Breathe products this month (see: https://fromlizzieslungs.com/2017/10/31/remembering-lizzie/).

Lizzie Dessureault

November 5: Meet Burton. Burton was diagnosed in 2011 at age 23, just a month after beginning his relationship with his heroic caregiver girlfriend Emily Hsiung. Doctors didn’t discover and target his ROS1+ cancer until very late, but he still managed to survive and live for over 3 years, doing things like getting his masters degree from Harvard University GSD and going to Burning Man (see pic). Burton died in October 2014 at age 26. After Burton passed, Emily sent me Burton’s compression socks to help me with the treatment-induced edema that plagues me and used to plague him. I still have Burton’s socks in my drawer.

Emily Hsuing & Mike Burton

November 6: This is Katie Cohen. She was diagnosed in January of 2015 at age 32. She died at age 34 on 4/8/17, less than a year after this photo was taken. In her two years post-diagnosis, she got married, saw her mom also die of lung cancer, traveled, started a blog and advocated to make more treatments available to LC patients. I never met her in person, but we chatted online several times. She was so full of life, so motivated to do whatever she could with the hand she’d been dealt. If I may flatter myself, I think we each recognized a bit of ourselves in the other.

Katie and Daniel Cohen

November 7: Meet Joan Fong. Like me, Joan started having symptoms in October of 2013 and soon after was shocked by a Stage IV LC diagnosis. She survived 45 months, going through _15_! lines of treatment. She passed on 7/29/17 at age 59. To me, the most remarkable thing about Joan was her irrepressible smile and spirit. I chose this photo because, who smiles with glee with their brain radiation mask?! Joan does, that’s who. Last year, I sat next to Joan at the annual Bonnie J Addario Lung Cancer Foundation Gala dinner. Sadly, she won’t be there this year, but her husband Ron will be, and he’ll receive the well-deserved Caregiver Award (along with Arash Golbon, Molly‘s husband).

Joan & Ron Fong

November 8: This is Brian Kissinger. Brian had been an active and well-loved member of the LC community for years by the time I met him at the ALCF Gala in 2014. He was diagnosed at age 33 just a few months after he and his wife welcomed their son. Brian survived almost 6 years, passing away 11/6/15 at age 39. A never-smoker (like many of us, incl. many I’m listing this month), his disease shocked him so utterly, he had to have the doctor spell out the type of cancer 4 times before he comprehended the news.

Brian Kissinger & son

November 9: Today I remember Jennifer Glass. I met Jennifer at Commonweal, where we spent an intense and life-changing week together (with 5 other participants) in their Cancer Help Program. She had been diagnosed a year before me at age 49, and had already established herself as a force in the blogging world and later as an advocate for Compassion & Choices. Our bond went deep. We had plans for a visit when she entered hospice, but she spiraled down too quickly, passing away at age 52 in August 2015. In one of her last emails to me she wrote “you are a bright star in my night sky.” Now, when I look up at the sky, I think she had it backwards: she’s one of the stars in my night sky. (This photo is of her on her long-awaited wedding day to her beloved Harlen, with her step-children, just 4 months before her diagnosis upended everything.)

Jennifer Glass, husband Harlan Seymour and his children.

November 10: This is Jillian Miller. In 2012, she was a vibrant 28 year old working as an RN and pursuing a master’s degree. In May 2013, Jillian passed away, only 10 months after receiving her diagnosis. I learned about Jillian through her devoted mother Ros Miller, whom I met at a lung cancer conference in 2015. Honoring her daughter’s memory, Ros remains an active LC advocate today, more than 4 years after losing Jillian.

Jillian Miller

November 11: This is Keasha Rutledge Draft. Keasha was an electrical engineer, a professional dancer, and the wife of Chris Draft. She was diagnosed at age 37 and passed away only one year later. She must have been a phenomenal woman because she not only married a wonderful man, but inspired him to launch a campaign to “Change the Face of LC.” I never had the pleasure of meeting Keasha, but I and thousands of other LC patients around the world know her through our cherished & tireless champion, Chris Draft.

Keasha Rutledge Draft & Chris Draft

November 12: Meet Oren Miller. Oren passed away on 2/28/15 at age 42, only 9 months after he was diagnosed. He was well known for his groundbreaking bloggerfather.com blog, and transitioned quickly into blogging about his experiences with LC. A beautiful writer, he brought me insights, and tears, more than once. I had just started to get to know him, and then he was gone – yet, so strong was his voice, that I still miss him.

Oren Miller, wife Beth and their two children

November 13: Paul Kalanithi:Paul Kalanithi​: neurosurgeon, writer, gorilla-suit-wearer. Paul died at age 37, 2 years after he was diagnosed. His #1 NYT best-selling book, When Breath Becomes Air, is a masterpiece.
Paul’s death, coming just days after Oren Miller​’s, shook me. I didn’t know Paul personally, beyond initial introductions, but his writing was a lighthouse helping me navigate very tricky waters. On the morning of Paul’s memorial, I lay on my acupuncturist’s table, tears streaming down, pooling in my ears until they spilled onto the pillow. I went straight from there to the memorial. I ended up seated behind his wife Lucy​, their daughter Cady held over her shoulder, looking backwards at me. Although Cady arguably suffered the greatest loss from Paul’s passing, as a baby, she had a preternatural calm, her infancy rendering her oblivious, or perhaps simply accepting. I looked into Cady’s big saucer brown eyes and breathed. The tears slowed some. My breath became air … and then breath again. Lighthouse or no, I would go on. Paul taught me so.

Paul & Lucy [Note: Everyone knows Paul’s scientific and literary brilliance. But, I chose this photo because I love how it captured a bit of his less seen “gorilla suit side.” Lucy is laughing at Paul doing something ridiculous totally deadpan, but with the slightest smirk/twinkle, so you know he’s joking around.]

November 14: This is Michael Volding. Michael passed away at age 51, 17 months after his diagnosis. Michael was active and fit, discovering his cancer because of some back pain during a run. In this picture you see him after a race he completed less than 6 mos. before he passed away. He left behind four young children and his lovely wife Emily Olson-Volding, whom I became friends with first online and later connected with in-person at an ALCF Gala.

Michael Volding

November 15: Meet Alisha Douglas. Diagnosed at age 27, she was extremely fit, a regular participant in triathlons and other races. A fellow ROS1der, she had just barely found/joined our group when she passed away in 2016, little more than year after she was diagnosed, and just two months after she married her husband Jon. I wish I’d had a chance to get to know her.

Alisha Douglas

November 16: This is Brad Chindamo. He was diagnosed in January of 2016, and gone 20 months later at age 48, leaving behind a wife and three children. He was athletic, playing college basketball and other sports. I only just learned that about him today. The thing that I remember him for is being a pioneer – one of the very first ROS1ders in the world to take the Phase 1 drug TPX-0005. In Phase 1, researchers start with very small doses until they understand toxicity levels. This drug holds a lot of promise, but Brad likely did not receive enough of it to be effective. He shared his experiences with our ROS1 group and we all learned and benefited from him. I’m so grateful to him. I may very well take this drug one day, and if I do, I will raise a toast to him as it goes down the hatch.

Brad Chindamo

Ide Mills (center)

November 18: This is Dana Reeve. She was diagnosed just 10 months after laying her husband, actor Christopher Reeve, to rest (and after spending a decade working with him on rehab and disability awareness). At age 44, just seven months after announcing her diagnosis, she was gone, too, leaving their 13 year old son an orphan. In Chinese medicine theory, I am told that each organ correlates to an emotion, and the lungs are associated with grief. I don’t know if I fully believe that theory, but it certainly seems apt here.

Dana Reeve

Kim Statham Ringen

November 20: Meet Abby Wilson. Abby had a persistent cough and was diagnosed as asthmatic at age 2, despite not presenting as asthmatic. Symptoms became so severe that a few years later she passed out and was given a CT where a large mass was found in her lungs, yet doctors still refused to biopsy the mass for 2.5 years because “kids don’t get LC.” She was finally diagnosed at age 9 with stage IV LC. Abby received chemo every 21 days of her life for 8 years, finally getting a treatment break and enjoying graduating from high school and her first semester of college. I chose this photo because Abby loved animals and was studying to become a Wildlife Rehabilitation Specialist. She passed away this June at age 19, while en-route to a cancer center seeking new treatment options.

Abby Wilson

November 21: Today I remember Craig Blower. Craig started experiencing a persistent cough back in 2010. Despite not responding to a series of treatments (antibiotics, steroids, an inhaler, more steroids), his doctor — stop me if you’ve heard this one before — assuming a non-smoker couldn’t have LC, didn’t order a chest CT for 3 years. Craig and I connected as fellow bloggers, and later met in person at an LC conference. I loved him for shamelessly cracking one “dad joke” after another on his blog, making light of impossible situations, and ending every post, except his last, with “Business as usual. Day at a time.” (His last post conceded that business was no longer as usual.) Craig passed away on 3/16/16, about 3 years after he was diagnosed. He was 63.

Craig Blower

November 22: This is Jill Costello. I never met Jill, but I have a soft spot for UC Berkeley grads, and she was a particularly outstanding one. Diagnosed the summer before her senior year, she stayed in school while enduring brutal chemo and radiation. As if that wasn’t enough, she remained an active member of Cal’s varsity crew team, receiving the PAC-10 Athlete of the Year award (among many other awards, too many to list here). She did this all while maintaining a 4.0 (seriously unbelievable) and spearheading the largest lung cancer fundraiser in history at the time ($45k for research). Sports Illustrated considered Jill’s story one of the 60 best stories to ever run in the magazine.
Jill passed away a year after she was diagnosed, on 6/24/10. She was 22 years old. As testimony to her enduring influence, the “Jill’s Legacy” group continues to raise awareness and funding. I just spoke to her college roommate and best friend K.C. Oakley last week about future Jill’s Legacy events.

Jill Costello (center)

November 23: This is Fredi Kronenberg (pictured here with her friend and famed wellness cookbook author Rebecca Katz). Fredi was an alum of Commonweal, which is how I learned of her and her work. She was a brilliant physiologist, championing the cause of integrative medicine in the worlds of academia and clinical research for decades. Fredi had been director of the Rosenthal Center for Complementary Medicine at Columbia and she was also on the adjunct faculty at Stanford. Her original prognosis was less than 2 years, yet with her scientific acumen and leverage of every imaginable combination of standard, experimental and integrative medical practices, she lived with advanced LC for a decade. I am so grateful for her work and her example. She passed in April 2017 at age 67.

Fredi Kronenberg (L) and Rebecca Katz (R)

November 24: Today, I remember Lesley McAllister. Lesley was diagnosed a few months before me, and we found each other through Eric. Lesley’s resume was impressive and included an engineering degree from Princeton, a JD from Stanford, a PhD from Berkeley, Peace Corps in Costa Rica, a Fulbright scholarship, a federal judge clerkship, and a tenured professorship at UC Davis Law School. She was passionate about the environment both professionally and personally, traveling, hiking and biking in remarkable locations throughout the world, often solo. I could easily get intimidated chatting with such a remarkable person, but Lesley was totally down-to-earth. We shared thoughts on both our traditional treatment options, and some alternative ones. When she went to Brazil last year, she brought us back some “magic pills” (harmless herb supplements blessed by famed healer John of God). We both figured “WTH, can’t hurt.” Unfortunately, they didn’t seem to help her much. Maybe I got the better bottle (I’m sorry, Lesley). Lesley died 8/30/17 at age 47, leaving behind her husband and two young children.

Lesley McAllister

Leilani Thomas

November 26: Meet Susan Rosell. She passed away at age 56 on 7/2/17, just a few days after my friend Molly, and I was in a daze. Suzi was such a fun woman. I picked this picture of her at the Blue Lagoon in Iceland to represent her love of travel and adventure. But, she had many other passions. A foodie, she ate at French Laundry at least a dozen times! I also just learned that she was a sci-fi fan and attended a Hogwart’s Triwizard Tournament. Plus, as a fellow cat lover, she fully supported and encouraged my crazy cat posts – a sure way to win my heart.

Susan Rosell

November 27: This is Filip Calis, husband of Leen Bruggeman. Filip was a wonderful father of two, a hard worker and sportsman who ran marathons and once even 100km’s in an international competition. He was diagnosed in Oct 2014 and ran out of options in March 2016, at age 44. Filip and Leen were early members of our ROS1+ Facebook group. They did everything possible to extend his life, including accessing cutting edge medications through trials and compassionate use. Leen continues to stay in touch with the ROS1der group and will always be welcome there. 

Filip Calis, his wife Leen Bruggeman and their two children

Losing fellow ROS1ders hits especially close to home, and we have lost too many in the short time our FB group has existed. There are not enough days in November to feature them all, but I would at least like to post their names:
Arne Steding age 33
Stuart Grief age 55
Edgar Dinkelaar age 36
Beverly Kilzer Nott age 39
Nora Reyes age 60
Filip Calis age 44
Lisa Hampton age 42
Stephanie Polecastro age 31
Gerty Fleurkens age 47
Nicola Ueber age 41
Elizabeth Dessureault age 27
Jing Lin age 43
Nicolina La Ferrara age 67
Scott Nierfro age 54
Allan Berke age 57
Steve Fox age 33
Jason Flory age 46
Brendan Russell age 44
Tanya Sazama age 39
Brad Chindamo age 47
Alisha Douglas age 28
Luke Fordward age 34
Dave Bergman age 37
Tracy Ann Gordon age
Michael Burton age 23
Travis Goodnight age 39

November 28: Meet Jeff Rusch. He studied poetry and writing at Stanford and Yale. Later, he founded the 964 Natoma warehouse, a thriving culture hub in San Francisco from 1994 to 2005, where he met his wife Zoe Keating as she started her music career. Jeff quit his 15 year job as a UI Designer at UC Berkeley when their son was born and the family spent the first years of Alex’s life on tour. Jeff took on parenting logistics as a design challenge: he had a stylish satchel full of everything he’d need to change a diaper or amuse in a nightclub, restaurant or airplane. He packed a portable crib in his luggage that went in Zoe’s dressing room. Jeff’s parenting enthusiasm and partnership made Zoe’s full-time music career possible and she says she is still trying to figure out how to do it without him. Jeff was 51 when he was diagnosed; he passed away 9 months later.

Jeff Rusch, Zoe Keating & son

November 29: This is Chip Kennett. Like my friend Corey, Chip received his LC diagnosis after discovering a blurry spot in his eye. At the time, Chip was 31, he had a 2 year old, and his wife Sheila Kennett Johnson was pregnant with their second child. Chip was a former Senate staffer, soccer dad, avid golfer, and even Tough Mudder competitor. He passed a little over 2 years after his diagnosis.

Chip Kennett and family

November 30: Today, I remember Molly Golbon. I’ve already written a whole memorial blog about Molly, so this is a little redundant, but I could hardly leave her off my LCAM memorial list this month. Molly was a devoted wife and mother to her young girls. She was passionate about her career. She enjoyed travel, yoga and dogs, and hated cooking. I miss her. She left a hole that can’t be filled. I have met and made many other wonderful LC friends, but the bond formed with Molly, when we were both in the early throws of diagnosis, will always stand apart. It reminds me of the bonds I formed with the other new moms I met when we each had our first children and shared those tumultuous early months together. Our worlds shifted so radically, and in parallel – we shared a unique connection. Molly passed away this summer at age 42, 3 1/2 years after she was diagnosed.

Molly Golbon and daughters

“November 31, 32, and 33”: During the month, while I was posting these daily memorials on Facebook, I was contacted by three people who wondered if I might also honor their loved ones. I had already planned out my daily posts for the month, but I would like to include them here.

This is Rick Moeller. Rick passed last year at age 56. He had the uncanny ability to make everyone feel special in their own way.  He was full of life, bigger than life, loved by many, and simply made this world a better place. He is greatly missed by his wife, children, family and friends.

Rick Moeller

This is Rich Pollard. He passed Sept 5th 2017. He volunteered at the cancer center and gave everything he had until his final days. His daughter Tammy sweetly reports that “he was the best.”

Rich Pollard

This is Brittany Coppedge. In September 2006, Brittany didn’t feel well. The doctor gave her antibiotics. They didn’t help. She continued to go through the drill: more coughing, tiredness, weight loss; more antibiotics, inhalers, and misdiagnoses, until she ended up in the ER. On December 3, she was finally diagnosed with lung cancer. A very short 25 days later, this 13 year competitive gymnast passed away. She was 19 years old.

Brittany Elizabeth Coppedge

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Nurse log, photo by Matthew Smith

Epilogue: Fallen Trees are Nurse Logs

Sadly, Beth Caldwell, a fierce metastatic breast cancer advocate, died earlier this month. In September 2016, Beth used a beautiful metaphor to help her cope with the devastating and constant stream of loss in the metastatic community and I think it’s a perfect way to conclude this tragic litany of 30+ souls lost too soon. Beth wrote: “The only thing that brings me any sense of meaning these days is to think of these fallen trees as nurse logs. Their memories, their lives, their children, their passions, their faces, their senses of humor, their wisdom, their spirits, their beautiful beautiful beautiful spirits are nurturing us, feeding us, giving us strength to go on, to demand change, to bring research to our friends, to fight against death death death so much death. Their falling leaves a hole in the forest canopy, but their souls are bringing new life to our movement and nutrients to keep us growing.

“And someday this forest will cover the world.”

The post Lung Cancer Awareness Month — #433aday is a National Emergency appeared first on Every Breath I Take.

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Slide #1:

I’m here to speak about the ROS1der story. We are breaking new ground, collecting information and biospecimens from patients across the globe and enabling research and development of treatments for ROS1+ cancer in ways that would never have been possible before.

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Slide #2:

Back in 2015, I attended the IASLC WCLC in Denver, Colorado. At that time, I had been on a targeted therapy called Crizotinib for about a year. I knew I was approaching the median effective time for this treatment, and I was trying to prepare and figure out what treatment I might shift to next. I had coffee with Dr. Ross Camidge, a top ROS1 researcher, to discuss this. Dr. Camidge reported that there was very little on the horizon for ROS1+ patients. Why? Because researchers had a hard time collecting enough ROS1+ patients to conduct valid studies.

The problem came into clear focus: ROS1 fusions represent 2% of NSCLC patients. If every NSCLC patient were tested, about 2,000-5,000 patients would be identified each year in the U.S. (many thousands more if you add in other countries, and also the 9 other types of cancer where ROS1 has been found). That’s a small population within the greater cancer community. Small population size means difficulty gathering both a sufficient patient cohort, and sufficient research investment.

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Slide #3:

This was a problem that I and other ROS1+ patients were very motivated to resolve. We developed a 5 step approach to instigate a greater investment and more research into ROS1+ cancer to prolong our lives.

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Slide #4:

First: We formed a team. This was an informal, organic process. Patients and caregivers interested in spearheading this project met online and at conferences. There were not any eligibility requirements, but in hindsight, here are some characteristics of our leadership team that helped make it work:

• Diverse & Complementary Skill Set – Nobody had directly relevant medical research experience, but we did have people with backgrounds in business, science, law, writing, web design, marketing and project management.
• Time & Health – The demands of this project are significant (e.g. weekly calls, tasks, travel). We all committed and most of us had the good fortune to enjoy extended periods of good health to do this.
• Flexibility – We are not a dictatorship, nor are we leaderless. As a patient group, we cannot risk having just one leader or a very strict organizational structure. We have to accommodate the realities of living with advanced cancer.
• Scientific Capability – It turned out to be crucial to our project to have a few leaders that really understood the complex science and who could communicate both with the researchers and then back to the less scientifically sophisticated in our group.
• Disincentives – It’s important to note that having a group of patients and a thriving online community is not enough in and of itself to create a leadership team who will launch a program like this. There are many reasons people may choose not to do this, including: discomfort in working with others, feeling lacking in skills or authority, can’t afford the time/money/energy, don’t have a tolerance for some criticism, preference to work on shorter-term efforts with more immediate results than medical research which can take years.

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Slide #5:

With a leadership team in place, we moved on to Step 2: gathering ROS1+ patients to facilitate research. We didn’t need to reach every ROS1+ patient, or even a majority. We succeed if we achieve a critical mass.

One big hitch was patient privacy. We couldn’t reach patients directly (unless they made themselves and their ROS1 status public), so we had to make ourselves as public as possible and help them find us.

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Slide #6:

Our first and probably most effective tool for aggregating patients was our private ROS1+ Cancer Facebook group (which also happens to be a very useful community for ROS1+ support). [Side note: we also tried some other online platforms like Inspire and Smart Patients for our group, but FB clearly had the most momentum, so we focused on that.]

People can find us by searching FB for “ROS1,” but since it is a private group, they cannot see the content of the group unless they are accepted as a member.

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Slide #7:

Later we recognized the need to also have a public-facing, non-private presence online. So we created a website: ROS1cancer.com. This public website helps raise our profile for other patients searching for us, and also offers a venue for non-patients interested in learning about or contacting us (e.g. doctors, researchers, journalists, advocates for other health concerns). It also lends our effort a more professional credibility.

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Slide #8:

To help spread the word, we created flyers and passed them out to our doctors and oncology centers and distributed them at conferences. We have translated these flyers into several languages which can also be found and downloaded from our ROS1cancer.com website.

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Slide #9:

In further efforts to reach and aggregate ROS1+ patients, we have: blogged, done press interviews (both mainstream and industry), attended and spoken at conferences, scoured the web for other patient mentions of ROS1, and even created a really awesome animated video.

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Slide #10:

Step 3: Once we had aggregated a critical mass of ROS1 patients (about 50). We reached out for help. I called Bonnie Addario at ALCF. I knew that ALCF had experience launching research and thought they might be able to help. Luckily, the ALCF and their sister organization ALCMI embraced us. Their professional experience and support has been invaluable in many ways, including helping guide our next step…

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Slide #11:

Step 4: It is critical to consider the needs of a group before launching any sort of major effort. With the help of ALCF and ALCMI, and researchers, we learned that in order to generate more and better treatments for ROS1+ cancer, we needed to create more cancer models (cell lines and mouse models). So, rather than focusing on any particular type of treatment (chemo, targeted therapy, immunotherapy, vaccination, combinations of these things, etc.), we focused on figuring out how to generate more ROS1 models in general, and how to make them widely available to as many researchers as possible.

It’s important to highlight the unique needs of the ROS1 group here. Typically, historically, when patients donate bio-specimens for research, the researchers (or their employers) then own that bio-specimen and keep it proprietary. In the case of ROS1 – we know we have a very limited pool of patient samples. So, we cannot afford to abide by these historical research norms. Our priority is to get as many cell lines and models out to as many researchers as possible. This requires us to upend some long held practices. As patients, we are changing the way things are traditionally done.

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Slide #12:

Step 5: Together we leveraged a team-based approach to achieve our goal. The ROS1der effort is truly a partnership between patients, researchers and advocacy organizations. “Patient Driven” means we have an active role in the process – not just raising money, or serving as the “face” for marketing and publicity. We all contribute significant time, energy, resource and skills. This became the “Global ROS1 Initiative.”

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Slide #13:

The first project of the Global ROS1 Initiative was to conduct a survey, gathering more data about ROS1+ patients. We shared initial results of that survey at last year’s IASLC WCLC in Vienna. We have gathered more data since then and we are in the process of launching a second generation of that survey.

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Slide #14:

After the survey, we shifted focus to collecting actual ROS1+ biospecimens for creating cell lines and mouse models for lab research. In August, we announced our partnership with ALCF, ALCMI and Champions Oncology with Dr. Christine Lovly as principal investigator. We are also in discussions to partner with Drs. Doebele and Shaw and exploring options with researchers in other countries as well.

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Slide #15:

As proof of concept, I am happy (thrilled!) to report that prior to even formalizing partnerships, we have collaborated with University of Colorado. ROS1+ patients contacted the ROS1der team leaders in advance of a procedure and we contacted Dr. Doebele at Univ. Of Colorado. Dr. Doebele then coordinated directly with the patient for remote consent and arranged for express shipment of materials. The pleural effusion or tissue biopsy materials were received at Univ. of Colorado within 24 hours and two cell lines have been successfully created.

Two cell lines might not sound like a lot, but since we only knew of about 5 ROS1 cell lines in existence in the world previously, these additional 2 – before even our official launch – is significant and gives us great hope for the potential of this Initiative to really impact the future of research for ROS1+ cancer.

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This was my first trip to Japan (or anywhere in Asia). So, Eric and I took a couple of days to tour Japan a bit. We had a great time and particularly enjoyed the sights in Kyoto and Kamakura. Our photo album.

The post The ROS1der Story (my talk at the 2017 IASLC World Lung Cancer Conference in Japan) appeared first on Every Breath I Take.

A couple of months ago I had a conversation with my friend, Linnea Olsen. Samantha and I call Linnea the “O.G.” (that means “original gangster,” Dad), because, at 11 years in, she’s one of the longest surviving Stage IV lung cancer patient/advocates we know, and a phenomenal bad-ass. Linnea told me how she had gotten a tour of the pathology lab and even seen her very own cancer cells. Well, color me jealous! “How’d you get to do that?!” I pried. And casual AF, she replied, “It wasn’t that big of a deal – just ask.”

Just ask? You can do that? Well, ok, if you say so, O.G.

So, I did. At my next appointment, I said to my oncologist, “So, I know I’m your weirdest patient ever, but I’d really like to see my cancer cells from my biopsy 3 years ago … can you hook a grrl up?” He laughed heartily. “I’m serious,” I said. “Oh, I know,” he replied.

Two weeks later, I was in the pathology lab getting a personal tour by Dr. Charles Lombard, the Medical Director of Pathology at El Camino Hospital. Dr. Lombard had signed off on my pathology report from my original biopsy in January 2014. I think we were equally amazed to see each other. He doesn’t get a lot of patients coming through, let alone ones he helped diagnose at Stage IV over three years ago. And, I’d never met a pathologist or seen a pathology lab before.

Dr. Lombard had pulled my slides from his archive in preparation for my visit. I sat down at the microscope and peered at the images. Oddly, the images of the cancer cells–the cells that were devastating my body–looked innocuous, and even sort of beautiful. Additionally, Dr. Lombard took me on a fascinating tour of the whole pathology lab. Seeing the scope and breadth of work that goes on there was a vivid reminder of how much goes on behind the scenes of patient care.

My visit triggered some thoughts about how patients interface with their doctors and the medical system in general, which I’ll share tomorrow, in Part Two of my blog about my field trip to the pathology lab. But for this Part One, I would just like to share some photos to give a sense of what I saw on my tour, and perhaps encourage others to take the leap and join my tribe of weirdo – actually, let’s go with “engaged” – patients, and ask for your own path lab visit. If nothing else, it’s a rare opportunity to visit the hospital without getting stabbed for an IV or shoved in a radioactive tube. Fun! #CancerPatientGoals

This is an image from my ROS1 FSH test. I believe the little green and pink dots indicate ROS1+, but to me this could be a NASA image from outer space, or I have aliens inside me. I would totally buy any of those three explanations.

I thought this was a close up of the pattern from my Grandma Gladys’ bathrobe from the 60’s, but Dr. Lombard insisted it was an image of my cells.

I’m not totally sure what this is. Maybe I’m having twins? (joking, Eric)

Who sees a panda here? #GiveMeMyMD

Parafin blocks in process

Paraffin block for slicing

It’s like a Jamba Juice for vampires up in here.

The post Field Trip to the Pathology Lab! (Part One of Two) appeared first on Every Breath I Take.

Sign the Petition here

Recently, the cover story of the Lung Cancer Special Issue of Cure Magazine set off a firestorm within the lung cancer community. “Quitting Smoking is Possible,” the cover declared in a large red font, and then the magazine flopped open to a two-page centerfold featuring a hand holding a cigarette, followed by a large chart comparing over half a dozen FDA-approved smoking cessation aids.

UGH. I am a lung cancer patient – diagnosed Stage IV at age 41 while working as a fitness instructor and having never smoked or lived with a smoker in my life. This headline ruined my day.

For decades, anti-tobacco efforts used negative and threatening images about lung cancer to warn of smoking’s risks. While effective at reducing smoking, this approach caused people to equate smoking with lung cancer. Smokers and lung cancer patients became villains, along with tobacco. This villainization and stigmatizing of the people — the lung cancer stigma — has wrought much damage, leaving lung cancer as the most deadly cancer worldwide, yet one of the least funded, resulting in a survival rate that has barely improved in the last 40 years.

Since my diagnosis, I, along with many others in the lung cancer community, have spent much of our precious time advocating to stop the lung cancer stigma, and still it persists. How did CURE Magazine, the largest consumer publication in the United States focused entirely on cancer, with broad distribution to cancer patients, cancer centers and advocacy groups – in their special Lung Cancer issue, no less – miss the message lung cancer patients have been trying to get across for years now?

The “smoking equals lung cancer” trope is unfair and inaccurate. The U.S. surgeon general lists 21 deadly diseases, including 11 cancers, caused by smoking, and the New England Journal of Medicine lists more than a dozen other diseases that also may add to the tobacco death toll (see here). But media and publications (like the CURE Magazine cover story) focus smoking and smoking cessation discussions primarily, and often exclusively, on lung cancer. This reinforces the stigma–and it needs to stop.

Why do I care about this issue with such a passion? I have at least 8 reasons:

1. The public gets the mistaken impression that if they don’t smoke, they’re safe from lung cancer. As a never-smoker, both my doctor and I were shocked when I was diagnosed with advanced lung cancer. I’d been diligent about getting my first mammogram a year prior to my diagnosis. Yet, lung cancer wasn’t even on my (or my doctor’s) radar, despite killing almost twice as many women as breast cancer every year. Lung cancer, the number one cancer killer worldwide, needs to be on everyone’s radar.
2. The vast majority, about 80%, of lung cancer patients today are already never or non-smokers. Telling them they need to quit is offensive and mostly pointless.
3. The public gets the mistaken impression that lung cancer is the only significant risk of smoking. People need to understand the entire universe of risks taken, and what other types of diseases to watch out for, if they choose to smoke.
4. The stigma surrounding lung cancer means that funding for this disease falls far short of other diseases.
5. Inadequate funding results in less research and dismal survival rates.
6. Continued focus on smoking overshadows an alarming trend. The annual increase in the incidence of never-smokers developing lung cancer (attributable to an absolute increase in number, not a change in ratio of never-smokers to current and ex-smokers) has risen precipitously (and so far, inexplicably) in the last decade (see here).
7. The focus on smoking also overshadows the population of younger lung cancer patients, who are more likely to be never-smokers than older patients. In 2014, the year I was diagnosed, roughly 30,000 people under the age of 50 were diagnosed with lung cancer and slightly over 21,000 died from the disease. To put this in perspective, approximately 8,300 women under the age of 54 died from breast cancer that same year (see here).
8. Lung cancer patients experience blame (imposed both internally and externally) for their disease more than other types of patients, resulting in hesitation to seek or receive proper treatment. This is a heartbreaking and unfair burden to lay upon people already suffering from a terrible diagnosis.

To be clear, nobody, least of all lung cancer patients, should oppose smoking cessation efforts. Our quibble is with those continuing to highlight smoking in the lung cancer space. So long as media continues to perpetuate the message that lung cancer is “the” smoker’s disease, all of us lose, especially us lung cancer patients. We must de-link the constant anti-smoking messages from lung cancer. The stigma is literally killing us. The era of lung cancer being the poster child for the anti-tobacco and smoking cessation messaging needs to end. We in the lung cancer community are asking CURE Magazine and other media to please help us #StopTheLungCancerStigma. Please, sign our petition HERE.

The post Call to ACTION: Stop Promoting Lung Cancer Stigma in the Media appeared first on Every Breath I Take.

Photo by Chris Vreeland

I’ve just recently realized that it’s not enough to answer, “No, I’ve never smoked.” It’s not even enough to emphasize, “not even once – not even a single cigarette.” The stigma is so entrenched that even then, people immediately jump to an assumption I was exposed to second-hand smoke. So, I’ve learned I must add, “and, I have never lived or worked with smokers either.” Usually they follow up with something along the lines of, “but you’re young and healthy, so it must be under control … you’re going to be ok, right?” And I am obliged to respond, “Not exactly, it’s Stage IV.” It’s only then, when I’ve finally exhausted all the inquirer’s biases and false assumptions, that I finally get the appropriate response: shock, a little compassion and a hint of fear.

It’s fear that’s the key here. It’s what the inquirer is trying to avoid. If they can just find a way to explain my disease, then they don’t have to concern themselves with it. If they can just find a way to blame me, they’re off the hook. Sorry, Charlie — you’re not getting off that easy when you chat with me.

But, it’s not just bystanders looking to lay blame. In some weird variant of the Stockholm syndrome, patients do it to themselves as well. It’s common for smokers, even smokers who quit many years before their lung cancer diagnosis, to blame themselves for their disease, sometimes not even seeking appropriate treatment, even though smoking causes a whole host of other diseases and we don’t see that same kind of shame and stigma for other diagnoses (see Nancy’s story for one example of the difference between having lung cancer vs. breast cancer). And, it’s not just smokers that blame themselves for their lung cancer. I had lunch with a fellow never-smoker lung cancer patient recently, and she relayed to me how, about a year and a half prior to her diagnosis, she lost one of her children. It’s hard to fathom anything more devastating than losing a child, and so, she conjectured, perhaps the stress and sorrow of that event somehow suppressed her immune system and triggered her disease. She was blaming herself. I recognized this immediately because I’ve been there.

A few weeks after I was diagnosed, a very kind, well-meaning person sent me the book Getting Well Again (Amazon affiliate link). In the first few pages I read, “We believe that cancer is often an indication of problems elsewhere in an individual’s life, problems aggravated or compounded by a series of stresses six to eighteen months prior to the onset of cancer” and it sent me into a tailspin of self-blame. For months, I pondered all the ways I’d failed to properly manage my stress, all the instances of emotional upset in the prior eighteen months. In trying to find an explanation for the inexplicable, I blamed myself.

About nine months after my diagnosis, I attended a retreat for cancer patients and I brought this issue up in one of our group therapy discussions. Stuart, the group leader, let me off the hook. “Lisa,” he said, “I have been counselling people for half a century, and I can tell you that you did not cause your disease. I have seen people that are in absolute crisis, that never develop cancer, and I have seen people with only the most minor issues get horrible diagnoses. That doesn’t mean it’s not worthwhile to reflect on the past, and try to strengthen your tools so you can facilitate healing going forward. But that’s a very different thing than blaming yourself.”

This was a revelation to me. I don’t know why I got this disease, and that still makes me crazy, but I have let go of the blame and guilt. Interrogate me all you want. I never had any known risk factor besides breathing. There’s no reason I should have this disease, and therefore, there’s no reason you shouldn’t. So let’s stop the blame game and commence the cure tour, shall we?

The post The Lung Cancer Blame Game – How People Blame the Patients and Patients Blame Themselves appeared first on Every Breath I Take.

Photo credit: Ferran Jordà / Smoke

Why? Because I’m pretty damn sure that even if you don’t ask, I know what you are thinking. If you’re anything like I was pre-diagnosis, you’re assuming I’m a smoker, or a former smoker, or, at the very least, that I’ve been exposed to lots of second-hand smoke. But, you’d be wrong. And, I’d love the opportunity to educate you and as many others as possible about the realities of lung cancer. I think I can do more to dismantle the stigma by inviting the conversation, rather than stifling it.

The “Did you smoke?” question is offensive, of course, because it implies that the person deserves their cancer more than other types of cancer patients, and thus merits less support or inferior medical care. The question is sometimes motivated by the inquirer’s need for a false sense of security (the “I’m safe because you smoked and I didn’t” line of thought), which is understandable, albeit patently wrong. But, the inquirer won’t learn how wrong they are if I don’t get a chance to talk with them.

If you ask me if I smoke(d), here’s what I’d say (sweetly, of course; I’ll roll my eyes at you later): I am a healthy, never-smoker with lung cancer (I’ve never lived or worked with smokers either, so you can forget that loophole). My story shocks a lot of people, but it shouldn’t. Lung cancer is the #1 cancer killer worldwide. And two-thirds of us are either never-smokers, or long time non-smokers. I am not a fluke, some crazy exception to the rule, easily dismissed. Lung cancer strikes tens of thousands of non-smokers every year.

Let’s talk about that stigma head on, as well. What if I did answer that question “Yes, I smoked”? Should that change anything? I’m no tobacco company apologist. I find the habit repugnant, but I separate that from the people who partake (so long as they don’t partake near me). 90% of smokers started their habit before they turned 18, prey to the Svengali marketing magic of a billion dollar industry. Many GIs received cigarettes in their rations from our government. Tobacco is notoriously more addictive than heroin. Can we really abandon people who got hooked on a bad habit in their youth or while serving our country, essentially leaving them for dead? And if so, why only abandon smokers unlucky enough to get the stigmatized lung cancer, even though smoking is a major risk factor in many other maladies (e.g. bladder cancer, stomach cancer, breast cancer, heart disease)? Finally, religion isn’t my area of expertise, but I think the Bible says something about “don’t throw stones because those stones can hurt when they come back in your direction” (I’m paraphrasing) — smoking is a bad choice, but there are plenty of other bad choices that can impact your health. Poor diet, lack of exercise, excessive alcohol, insufficient sleep, these are just a few things that can cause disease. Should we dismiss a patient with breast cancer because of her sedentary lifestyle or potato chip habit?

Lung cancer, as my friend Janet says, “has an image problem.” “Stigma” is an ephemeral thing, but it has concrete effects. It is the reason why lung cancer receives dramatically less funding, both federal and private, than any of the other major cancers. And – as a consequence of the insuffiient funding – it’s the reason lung cancer is the most deadly cancer in the world (there is a direct correlation between funding, which supports research, and survival rates). If we can dismantle the stigma, funding and research will increase, and survival rates will improve. My way of combating the stigma is by being as public and vocal as possible. When an infusion lab nurse whispers my diagnosis conspiratorily, as though it’s something I should hide, I respond in full sotto. When someone asks how I’ve been, I share my story, even if it’s a little uncomfortable. Sometimes it’s not easy, but it’s important. It could save lives. It could save MY life.

So, go ahead and ask. Make my day.

The post Go Ahead (and ask me if I smoked) … Make My Day appeared first on Every Breath I Take.