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Tori Tomalia Is “Sharing Our Story” for Lung Cancer Survivors

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Stage IV lung cancer blogger Tori Tomalia, a mother with young children, gave a great speech at a lung cancer event yesterday. She posted the speech on her blog, and gave me permission to repost the text below. Inspiring!

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Sharing Our Story

I almost titled this post “Sharing My Story,” but realized that this is much bigger than me. Today I had the honor of speaking at the Peter A. Kaylor Lung Cancer Walk in Allegan, Michigan. I know how lucky I am to be able to speak out about this disease, when so many others who have gone before me are no longer able to do so.This was what I had to say about my one year, four months, and five days (so far) of living with lung cancer.

 ~ ~ ~ ~ ~

It started with a cough that wouldn’t go away. But everybody I knew had a cold, so it didn’t seem like a big deal. I started to feel a little better, but before long I had another chest cold. And I was exhausted, but I was in grad school full time, working, and raising a 4 year old and infant twins. Who wouldn’t be exhausted?!? But my breathing kept getting worse, so the doctor thought it was a return of my childhood asthma. We tried one medication, then another, then another. But I kept getting worse. Finally, in May of 2013 they sent me for a chest CT scan to see if there was something else going on. There was. The scan revealed a large mass in my left lung, that had wrapped all around and had caused my lung to partially collapse. A biopsy confirmed that it was lung cancer, and further testing showed that the cancer had spread to the other lung, my spine, my hip, my ribs, my shoulder blade, and my liver. I was unequivocally stage IV, inoperable, at age 37.

At that time, I thought it was impossible for a nonsmoker to get lung cancer. Clearly, I was very wrong.

So I began 4 months of chemotherapy. July, August, September, October, I struggled with side effects and tried to spend as much time with my family as humanly possible, to “make memories” as my social worker advised. I got to see my little girls learn to ride tricycles, and I got to see my son start kindergarten. The amazing thing was that as the summer progressed, my breathing started getting better. I was able to climb upstairs and kiss my son goodnight again. I was able to walk around carrying my little girls. And then the scans confirmed it: the chemo was working, and my cancer was shrinking. But as October rolled around, a question loomed: what next? The cancer was shrinking, but not gone, and a person can only tolerate so much chemo before the toxic side effects become too damaging. We discussed what they call “maintenance” chemo, a lower dose of chemo that they can give for as long as the patient can tolerate it, to try and keep the cancer at bay.

Meanwhile, the shock of having stage IV cancer was starting to wear off, and my thirst for knowledge had kicked back in. I started reading about personalized medicine, where they can test the tumor and figure out what went wrong to cause the cancer, called the cancer “driver.” My oncologist had tested me for two common ones, but my obsessive reading and research revealed that there are several other rare ones that can be tested for. I asked my oncologist for further testing and on October 31 – Halloween – I got the wonderful, game changing news that we had discovered what went wrong to cause my cancer, and that there is a drug to treat it. In November, I started on a brand new drug called Xalkori. I have been taking this medicine – two pills a day – for 11 months, and currently I have no evidence of active cancer anywhere in my body.

But I know the battle isn’t over. My wonder drug is amazing, and I am thankful for the good quality of life I have now. I still have side effects, but they are not as bad as chemo. However, I know that my cancer will eventually become resistant to this treatment, that my cancer will figure out a way around my super drug. If/when that time comes, I will pursue other treatments, plans B, C, D, and so on. I have stage IV cancer, I will always be in treatment.

To say that this past year has been life-changing is quite an understatement. I certainly appreciate things more than I used to, and I think I have gotten even bolder and more outspoken than I used to be, if that is possible. And I have connected with a whole lung cancer community full of incredibly strong and wonderful people, who I now consider my “lung cancer family.” Sadly, I have learned that this disease can strike absolutely anybody.

There’s Craig, diagnosed at age 60
Janet, diagnosed at age 55
Mark, age 47
Lisa, age 41
Molly, age 39
Samantha, age 33
Emily, age 28
Burton, age 23
and Corey, age 22

The thing we all have in common is that we were all diagnosed at stage IV. Stage IV. The other thing we all have in common? None of us deserved this.

Here are some sobering facts:

  • Lung cancer is the second leading cause of all deaths in the US.
  • Lung cancer kills almost 2x as many women as breast cancer and 3x as many men as prostate cancer.
  • Lung cancer in never smokers is 6th leading cause of US cancer deaths.

And yet, I chose to remain hopeful. I know that I am one of the lucky ones. Things are changing fast in cancer research. If I would have gotten this a few years earlier, I probably wouldn’t be here today. If I hadn’t pushed to get more testing done on my tumor, I might not be here today. Chalk it up to stubbornness, perseverance, or just dumb luck, I am very thankful to be here talking to you today.

I am alive because of research. There are some really exciting discoveries going on out there and some amazing things coming down the pike. My goal is to stick around long enough to see them.

Why I’m Behind on My Patient Advocacy Projects

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Today is a relatively typical day.  I’ve been up for 2.5 hours.  I haven’t tackled any major projects yet. Why?

6:50–7:20 AM
Wake up a few minutes before the alarm, take anti-reflux pill, check email, get up, step on scale, be bummed (again) about my post-cancer-treatment weight gain, resolve to spend at least 30 minutes on the treadmill this afternoon, brush cats

7:20-8:20 AM
Get dressed, help with family breakfast, help son get ready for school, help hubby with shopping list, eat breakfast (had to wait an hour after taking anti-reflux pill), log food intake in LoseIt! (only 360 calories for breakfast–yay!), take cancer pills, check Twitter, pet cats

8:20-8:45 AM
Load dishwasher, have several writing ideas flood into my head while washing big pots, clean up mess I made on the counter while distracted by writing ideas, realize my chemobrain has forgotten all writing ideas, play with cats

8:45-9:20 AM
Check Facebook while drinking milk/coffee, look at pile of urgent family paperwork, decide I should start on a lung cancer advocacy article, go see what cat is playing with, write blog post instead (with feline oversight)

But the day is young, the cats are now napping, and coffee is kicking in.  I still have hope I shall actually accomplish something today.

Oh, look, the hummingbird feeder is empty …

 

Why Aren’t Never Smokers Screened for Lung Cancer with LDCT?

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As you’ve probably heard, 25% of lung cancer patients worldwide are never smokers.  Like all lung cancer patients, the majority of never smoker LC patients are diagnosed with metastatic lung cancer, even though they often have no real symptoms.  How come lung cancer screening guidelines don’t suggest never smokers get screened for lung cancer?

Well, it’s all a matter of risk reduction.

Medical practitioners (and those who pay for their services) do not like to run a medical test when the patient might be put at risk for little benefit.  This is a concern if a test is not 100% accurate and follow-up procedures for a positive result are potentially invasive.  This is the situation with LDCT screening.  With today’s technology, a lung cancer diagnosis can only be confirmed with a biopsy, which is invasive and does carry some risk.  And, lung biopsies are not guaranteed to detect a cancer, even if one is present.  Lung cancer screening with low dose CT might generate a false positive (meaning the test says the patient has lung cancer when they really don’t). False positives could result in unnecessary invasive follow-up procedures with some risk to the patient.

For this reason, LDCT screening is only recommended for those who are at HIGH RISK for lung cancer. At this time, “high risk for lung cancer” means current or past heavy smoking history and age 55 to 75. These risk factors were not chosen due to stigma or discrimination. To date, these are the only two risk factor scientifically demonstrated to have a HIGH correlation with lung cancer in several studies. A very large clinical trial (the National Lung Screening Trial, or NLST) showed people who had these risk factors were likely to benefit from lung cancer screening with LDCT despite the risks of false positives.

For these patients at high risk for lung cancer, the benefits of screening outweigh the risks.  LDCT screening reduced their lung cancer deaths by 20% compared to screening with x-rays, simply by detecting the lung cancer before it spread and getting it treated early.  By the way, NO deaths due to LDCT screening occurred in the 53,000+ participants enrolled in the NLST.

Since lung cancer occurs in a low percentage of the never smoker population, the risk of screening doesn’t make sense for never smokers unless they have another high risk factor.

We know of other risk factors associated with lung cancer–radon gas in homes, air pollution, previous cancer treatments (especially radiation treatment to the lungs), exposure to certain hazardous materials, even an inherited gene.  However, analysis to date hasn’t shown any of these factors have as strong a correlation with lung cancer, possibly because it’s harder to track those risk factors in a controlled study.  As we learn more about how lung cancers get started, and how they differ from each other, we are likely to discover more HIGH risk factors that can be validated by objective analysis.

This definition of “high risk” and this method of screening are just the first steps in early detection for lung cancer. As more high risk factors (like the inherited version of the T790M gene) are validated by objective studies, people who have those risk factors should also be included in covered lung cancer screening, whether or not they have a smoking history.

As more accurate and less expensive lung cancer screening technologies become available, testing will become more accessible to everyone.  Someday–hopefully in our lifetimes–accurate lung cancer screening will be as easy as a blood test or spitting into a test tube, without the need for a biopsy.

So keep supporting more research!  We need accurate, affordable early detection of lung cancer in never smokers.

Why Advocates Seem to Talk So Much About Lung Cancer Screening

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On Thursday, September 25th, 8PM ET/ 5PM PT, #LCSM Chat will discuss the existing barriers in lung cancer screening in late 2014.

Recently I’ve heard some lung cancer patients say they feel abandoned by lung cancer advocacy groups.  These patients think the groups are focusing too much on early detection with lung cancer screening, and have abandoned those who already have the disease.

As a metastatic lung cancer patient, I don’t feel abandoned.  I feel lung cancer advocacy has never been more vibrant or successful than it’s been in the past year.  In the past year, lung cancer advocacy has featured:

  • Wide-spread national media coverage about lung cancer: Valerie Harper on “Dancing with the Stars” and other national shows, national news coverage of testimony on Capitol Hill about the need for lung cancer research funding, the “Turquoise Takeover” of prominent landmarks, and Molly Golbon’s cancer journey documented on NBC, for example.
  • Print and online articles discussing the need to eliminate lung cancer stigma and featuring the hope offered by new treatments and clinical trials.
  • More advocates, patients, doctors, and researchers posting and collaborating with the #LCSM hashtag on Twitter.
  • An increase in lung cancer bloggers compared to last year.

The focus of lung cancer advocacy hasn’t shifted away from research or treatments.  By my count, there are more new treatment options offered or announced this year for a wider range of lung cancer types than in any previous year: two new FDA-approved targeted therapies,  immunotherapy trials for all lung cancer types, an innovative new trial for squamous cell LC, a new study of Young Lung Cancer, new targeted drugs for mutations, newly-discovered mutations … the list is long.

Lung cancer screening with LDCT is a big deal because it is projected to save 18,000 lives PER YEAR by catching lung cancer before it spreads.  That’s more lives than most new targeted lung cancer treatments will save in a year.

We’re seeing more public discussion of lung cancer screening than treatments for four reasons:

(1) Lung cancer screening with LDCT gained major support at the end of 2013.
In December 2013, the US Preventative Services Task Force recommended lung cancer screening with LDCT.  As a result, the ACA now requires private insurance plans to cover LDCT as of January 2015.

(2) LDCT is becoming more available.
More hospitals and clinics are beginning to offer LC screening with LDCT, and are advertising that fact.

(3) The need for support is urgent.
The majority of lung cancer patients are over age 65.  In February, the Centers for Medicare and Medicaid (CMS) began evaluating whether to provide insurance coverage for LC screening with LDCT.  CMS will decide in November.   We must act NOW.

(4) Individual advocates have a chance to make a difference that will save lives.
The CMS decision is being made by a branch of the US government.  Our voices are needed to ensure those over 65 have access to LC screening, since most of them have Medicare as their primary insurance.  Lung cancer advocacy organizations are leading the charge.

The lung cancer community is still dedicated to raising awareness for ALL lung cancer patients and increasing research that will allow more lung cancer patients to be cured or to live with lung cancer as a chronic illness.   Advocating for LC screening is just one way to help more patients survive.  It’s part of the 2014 sea change in lung cancer.

My 2014 Stanford Medicine X Experience (Sep 4-7)

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I’m in Palo Alto, CA for four days attending the Stanford Medicine X (#MedX) conference, which focuses on emerging health-care technology and patient-centered medicine. The first day was a pre-conference workshop on Partnering for Health in clinical trials.

I’m having a blast! It’s like a giant TweetUp of patient advocates, healthcare providers, and technology innovators. I’ve met a dozen people that I’d previously only known online. Several of them are patients who are healthcare bloggers and tweetchat moderators like me and have diseases different than mine (diabetes, arthritis, lupus, other cancers, etc.) My roommate is a delightful young pre-med student who happens to love chocolate, and who has had no sense of smell for as long as she can remember (which is fortuitous, considering one of my Xalkori side effects).

Presentations and panels address the evolving nature of healthcare, with a strong emphasis on patient involvement. Some topics:
–How to include the patient voice when designing clinical trials
–How do patients who are not tech savvy (“no smartphone patients”) obtain medical records and learn about their disease?
–Technology to assist those with disabilities
–New apps and devices for improving outcomes (e.g., a device that tracks when bedridden patients need to be turned to avoid bedsores)
–The value of relationships in promoting health
–Training medical students and doctors to incorporate empathy in patient care and ask the patient what is important to them
–Patients self-tracking their health data (e.g., diabetes blood levels and insulin doses)
–Which metrics to use when choosing a doctor, and where to find them, and new ways to gather the info

At least half the people in the audience are interacting with their smartphones, laptops and tablets during the event. I can see how all the online activity is extending the reach of the conference, which is also being streamed live (except when the server crashes from overwhelming demand). It is fascinating to watch the presentations and simultaneously read a very active #MedX Twitter stream that summarizes, critiques and expands on what is being said.

I’ve seen some cool vendor demos also, like 3D printing of medical models and devices:

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My speech is tomorrow (Sunday September 7) at 10:10 AM PDT. Hope you’ll be watching via Medicine X Global Access! If you miss it, it will be posted online eventually.

I fly to Denver Sunday evening for my eight-week scan on Monday. I must admit this conference is a great scanxiety distraction.

Relax, Recoup and Regroup

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Today is my day to relax, recoup and regroup.  Just for today.

Yesterday I pitched, hit, threw, and ran (a very short distance) in a relaxed, laughter-filled softball game at my 40th high school reunion in Tacoma’s Cheney Stadium.  Both during the game and the reunion dinner in the evening, I had a chance to visit with people who grew up with me.  I appreciated renewing and reinforcing friendships, especially since I likely will not be around for my 50th reunion.  As the “Faithful Scribe” of the Reunion and Softball Committees, it was a wonderful to see so many people enjoy the months of work that went into making these events happen.  I was also surprised (and pleased) to learn how many classmates have been following my lung cancer journey on my blog.  It was a terrific day!

My sister Karen and me with Rhubarb, mascot of Tacoma Rainiers Baseball in Cheney Stadium
My sister Karen and me with Rhubarb, mascot of Tacoma Rainiers Baseball in Cheney Stadium

Now that the reunion is over, I’ve hit a turning point in the summer.  The looming deadlines imposed by outside events and projects have been met.  In addition to helping plan my high school reunion, I have been up to my eyeballs in lung cancer patient advocacy projects over the past three months:  working on the first-ever LUNG FORCE walk, collaborating with a group of metastatic patients on changes in lung cancer treatment guidelines, attending the big ASCO clinical oncology meeting in Chicago, preparing and giving speeches at conferences and events, writing articles and guest blog posts, and generating panel proposals about lung cancer for upcoming medical conferences.  Somewhere in there, I wrote blog posts, contributed to #LCSM Chat activities, researched new lung cancer developments, and communicated online with others in the lung cancer community.  I’m reminded why I’ve been feeling stressed this summer!

So, just for today, I’m resting up from all that exercise and socializing at the reunion, as well as reviewing what I want to do next.  I still have a long list of projects that don’t have externally-imposed deadlines.  I don’t handle pressure as well as I did before cancer (not that I handled it particularly well before) and need to wind down a bit and set priorities before jumping back into action.

And I MUST jump back into action.  I feel a pressing need to complete family and advocacy tasks ASAP, while I am able.  Even though I’m feeling pretty good right now, I can’t forget that my cancer might recur at any time, and people—including my friends—are dying of this disease every day.

But for now, I’ll bask in the fact that I just wrote blog post #100 for Gray Connections.

Tomorrow hubby Gerry and I start cleaning out the garage for the first time in 22 years.  No stress there.

Pondering Resources for Affordable Healthcare

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I’ve been thinking about the US healthcare system thanks to a fascinating Facebook discussion with other Stanford Medicine X epatients.  Each of us are too familiar with the strengths and weaknesses of the US healthcare system and its mix of insurers: Medicare, employers, and private insurance companies.

My focus is this:  whatever healthcare system we decide to have in the US, we need to be able to pay for it.  The reality is that healthcare resources are not unlimited.

Whether or not a healthcare system is government run and/or devoted to serving the good of all people, the resources required to operate the healthcare system are driven by a free market.  Governments and nonprofits fund only a small percentage of healthcare research and development.  Healthcare providers still choose what type of work they want to do and where they want to live in order to enjoy life and perhaps support a family.  For-profit companies still choose when and how to develop and manufacture drugs and technology, which are required to provide treatment and services. The government can’t afford to fund and/or control all these resources completely (even if some think it should).

Even if healthcare were universally acknowledged (and it isn’t) to be a basic human right, any comprehensive healthcare system will still have to ration healthcare services such as time with providers, technology, and treatments.  As a metastatic cancer patient, I am acutely aware of the rising cost of cancer care.  The drug keeping me alive would cost about $10,000 per month if I weren’t getting it free in a clinical trial.  Even if we acknowledge that everyone deserves to receive the treatments they need, we simply can’t afford to treat everyone with leading edge medical care at those prices.

A good example of this quandary is the new drug Sovaldi, which offers a breakthrough and long-awaited cure for Hepatitis C.    More than 3.2 million people are chronically infected with hepatitis C virus in the US.  A cure with Sovaldi currently costs about $84,000 per person.  A little math shows curing all the US patients would cost around $270 billion–and the cure is not permanent (people can get reinfected with the virus). Having health insurance cover that $270 billion could break the healthcare system and put premiums out of reach for many, no matter whether the system is structured as private pay, single payer (government health system), or a mixture of the two. So who gets the treatment?

Other countries with single payer, government-funded health plans solve this problem by limiting services they cover.  For instance, the National Health Service in the UK will not pay for the lung cancer drug, crizotinib (approximately $10k/mo), even though the drug can give a small population of lung cancer patients years of quality time.  When the government must consider how to use its resources to provide the best care for the nation as a whole, they decided the cost to keep that small group of cancer patients alive for only a year or two is too high.  So people who can afford crizotinib in the UK pay privately, creating a two-tiered health system.

You can’t duck the issue by simply saying, “Get rid of the gatekeeper insurance companies.”  Because healthcare resources are limited, and provided by a market economy, SOMEONE or SOMETHING is going to be the gatekeeper.  Who should it be?  Insurance companies? Government?  Healthcare providers?  Medical societies? Pharmaceutical companies?  Companies that manufacture generic drugs?  Research institutions?  Individuals?

To me, the most important questions are these:

1. What guidelines should our healthcare system use to determine who gets healthcare, so that everyone is treated in the same fair and ethical manner?

2. Who gets to make and enforce those decisions?

You might want to learn more about these questions.  The next person who declares bankruptcy due to a health crisis such as a heart attack or metastatic cancer may be you.  Or your child.

Speaking at 2014 Stanford Medicine X

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I’m looking forward to attending the 2014 Stanford Medicine X Conference (#MedX on Twitter) as an ePatient Delegate September 5-7 on the campus of Stanford University.  The conference, now in its third year, is the leading patient-centered conference on emerging technology and medicine.

This conference will give me an opportunity to meet and interact with other epatients (engaged and empowered patients who participate in their medical care) as well as innovators who are providing the technologies that enable epatients to learn about their health conditions, track their health status, and share their experiences with others.  I hope this will teach me more about how to use social media to provide lung cancer patients with hope and useful information, raise awareness of our disease, and contribute to research and clinical trials.

I will be speaking on the MedX mainstage about “Making Lung Cancer Visible” on Sunday, September 7.  My speech will be in the Ignite format (5 minutes, 20 slides that automatically advance every 15 seconds), which will be a challenge for my chemobrain!  According to the 2014 MedX schedule,  my talk will be the second in a group of epatient talks that start at 10 AM Pacific Time Sunday 9/7; my talk should start around 10:10 AM.

If you’d like to watch my talk live, please sign up IN ADVANCE (FREE!) for the Stanford Medicine X Global Access Program.  This will allow you to watch all MedX events via livestreaming on the Internet.  If you’re unable to watch it live, my talk will eventually be made available on the MedX YouTube channel — I’ll post the link here when it becomes available.

Edit Sep 17, 2014:
Stanford Medicine X talk posted my talk on YouTube — see it here.

Finding My Voice

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Tonight (July 31) at 7 PM Pacific Time I will be the first of six speakers sharing our cancer journeys at “Community Voices: Stories of Survival“. My talk titled “Finding My Voice” will tell the story of why and how I became a lung cancer patient advocate. The event will stream live on the Internet tonight, and will be available later as a podcast and video. Thanks to The Story Collider and the online community Smart Patients (who teamed to create this show in San Carlos, California) for inviting me to participate!

Meeting the Chemist

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This post originally appeared July 15, 2014, in ASCO’s cancer.net blog. Reposted with permission.
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My first ASCO Annual Meeting was an educational and exhilarating experience. As a science geek, I loved learning about new cancer treatments from leading researchers. But the highlight for me happened in a noisy back corner of a crowded poster session when I met Dr. J. Jean Cui, the chemist who is saving my life.

A little backstory: I was diagnosed in May 2011 with stage IIIa non-small cell lung cancer (NSCLC). After two series of chemo, two radiation protocols, two recurrences, and promotion to stage IV, I was told I’d be on chemo for the rest of my life. Thanks to “CraiginPA,” who I met in an online support group, I learned about a tumor mutation called ROS1 and arranged to have my tumor tested. I’m now enrolled in the same ROS1 clinical trial as CraiginPA, taking a pill called crizotinib (Xalkori) to suppress my lung cancer. I’ve had no evidence of disease (NED) status since January 2013. I know my cancer will likely return, but for now, life is almost normal.

CraiginPA and I both attended the 2014 ASCO Annual Meeting as patient advocates. We met “in real life” in Chicago the day before the meeting began and attended many sessions together. On the third day, June 1, we went to a lung cancer poster highlights session. Similar to a high-powered science fair, the session featured 25 large posters explaining ongoing studies, each with a researcher standing by to answer questions. One poster described a study of our drug crizotinib for ROS1 in Europe.

While we were tag-teaming the researcher with questions, we noticed two representatives of the pharmaceutical company who makes crizotinib standing nearby. We introduced ourselves and moved to a table to discuss when our trial drug might obtain FDA approval for ROS1.

After several minutes, one of the reps smiled and said, “Jean is here.”

CraiginPA’s face lit up. “She’s the chemist—the lead inventor who developed our drug!”

My geek meter pegged at ecstatic. The chemist who invented the drug that was keeping me alive was HERE!

“If I see Jean, I’ll tell her you’re looking for her,” one of the reps said. They excused themselves to talk to another researcher.

A bit giddy, CraiginPA and I went back to digesting the ROS1 poster. We had started debating where the drug actually bonded with the ROS1 protein on our tumor cells when a smiling young woman approached us.

CraiginPA recognized her instantly. “Jean! So good to see you again.”

I felt like I did when I’d been introduced to idols like Nobel Laureate Physicist Richard Feynman or MD/PhD/Astronaut Story Musgrave. This was not some academic stuck at a bench with glassware and data analysis. This cancer rock star was a real person, and she seemed just as happy to meet us as we were to meet her. How often does a researcher get to see the living, breathing proof that her work saves lives?

We hugged all around and coerced someone into taking a picture with Jean’s smartphone. I couldn’t have grinned any wider.

For the next 20 minutes, Jean fielded our questions about her background, why she chose chemistry as a career, and how her team designed the drug. CraiginPA and I were like two kids getting a peek behind the Wizard’s curtain at the magic of cancer research. We agreed this experience was easily our highlight of the meeting, especially for me since I experienced it with CraiginPA who first told me about this drug.

Later Jean emailed us the picture, along with an invitation to ask her any further questions we might have—a perfect end to an amazing day.

So stop me if you’ve heard this one: a patient advocate, a pharma rep, and a chemist walk into a poster session…

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