Precision medicine treatment update for advanced NSCLC (Dec 2016)

If you have been diagnosed with advanced non-small cell lung cancer (NSCLC), please read this blog post.  It could buy you months or years of good living.  Lung cancer treatments are advancing so fast that your cancer doctor may not know this information–even if they are at a major academic cancer center.

Scientific evidence is accumulating that genomic testing and targeted therapies for cancer patients who have advanced non-small cell lung cancer make a significant difference in outcomes.  By “significant difference,” I mean a year or more of survival with good quality of life.  Genomic testing and a targeted therapy have given me no evidence of disease for four years despite my metastatic lung cancer.  Now THAT’s is a significant difference!

Genomic testing looks at the cancer cells DNA for alterations in certain genes that may be driving the cell to act like cancer.  FDA-approved drugs are available that can target some of these driver genes (EGFR, ALK, and ROS1) and inhibit the cancer–these drugs are called “targeted therapy.”  Targeted therapy for other driver genes are available through clinical trials.  These drugs do not cure, but they are usually more effective and more tolerable than chemo.  Not every NSCLC cancer will have a driver gene, and not every driver gene has an effective treatment.  However, it’s worth investigating, because about 60% of NSCLC adenocarcinoma patients likely DO have a driver gene that can be targeted with an approved or experimental drug (per the LCMC II study).

Guidelines from the College of American Pathologists (CAP), the International Association for the Study of Lung Cancer (IASLC), and the Association of Molecular Pathologists (AMP) recommend analyzing either the primary NSCLC cancer tumor or a metastatic tumor for EGFR and ALK, regardless of patient characteristics (such as age, race, or smoking history). The National Comprehensive Cancer Network guidelines for metastatic non-small cell lung cancer strongly recommend testing for alterations in EGFR, ALK, and ROS1 genes, as well a broader genomic panel to look for driver genes that might have clinical trials available.

A recent article is a great reference on this subject for both physicians and for patients who want to learn more about their options.  It discusses evidence-based molecular testing options, driver genes, and available targeted therapy options, including off-label use of FDA-approved drugs for patients whose cancer mutation does not yet have an approved treatment. It also provides references to professional society guidelines and key journal articles.  The authors are Lecia V Sequist, MD, MPH (Associate Professor of Medicine, Harvard Medical School–an EGFR superdocs and a member of LUNGevity’s Scientific Advisory Board) and Joel W Neal, MD, PhD (Assistant Professor of Medicine–Oncology, Stanford University/ Stanford Cancer Institute).

Those of you with advanced NSCLC might want to share the article with your cancer doctor.

Personalized, genotype-directed therapy for advanced non-small cell lung cancer by Lecia V Sequist, MD, MPH, and Joel W Neal, MD, PhD

Research and new treatments are moving faster than most cancer physicians can track.  Patients with advanced NSCLC can increase their chances of survival if they learn more about their disease.  I hope this blog helps you do that.

More cancer research. More survivors. No stigma.

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I want to see cures for ALL cancers.

In most cases, we can’t know for certain what caused an individual’s cancer, meaning we can’t determine exactly what caused their normal cells to mutate and become cancerous. Since we don’t know all the causes, we can’t PREVENT all cancers. All we can do is reduce our risk. Because we all need to eat and breathe, and our world contains toxins known and unknown, we’ve all likely done something that increases our risk of getting cancer.

Smoking is a risk factor for 14 types of cancer, and affects every organ in the body.  I support anti-tobacco campaigns to educate and hopefully prevent more people (especially young people) from consuming any tobacco product. I support compassionate smoking cessation efforts to help people find motivation to quit if they did start.  I hope people who did use tobacco (and those who love them) can forgive and move on to healthier lifestyles.

But I also recognize that tobacco is more addictive than heroin or cocaine.  According to the American Cancer Society, the best way to quit for most people is some combination of medicine, a method to change personal habits, and emotional support.  Unfortunately, many smokers who have the desire and motivation to quit lack the tools and support necessary to quit.

Humans are not perfect. Up to 90% of smokers began before age 18–when we all make risky choices for the wrong reasons–and became addicted.  But we’ve all made decisions that could put our health at risk.  I’ve made my share: pulling all-nighters to study for finals, consuming cola drinks and chocolate for energy during long hours on a tough aerospace proposal, accepting a high-stress job. I knew these weren’t the healthiest choices, but I did them anyway.  Does that mean I deserve a terminal illness?  If a world-class athlete was fatally injured while competing in the Olympics, would we shrug in acceptance because they chose a high-risk sport and thus were asking for death?

To repeat one of my catchphrases:

“Yes, it’s healthier not to smoke, but it’s not a sin that warrants the death penalty.”

Metastatic cancer has killed so many of my friends. I saw their pain, and the anguish of their loved ones, and I find I don’t care what might have caused their cancer.  I don’t want to lose any more people to this beast.

I want the allocation of research funding to reflect the science that has the best of chance of making a difference for cancers that kill people: metastatic cancers.  I want everyone to receive effective treatment for ANY cancer they may have, regardless of why they have the disease, or where they live, or how old they are, or what insurance they have.

Would you want someone to decide whether you deserve healthcare based on YOUR past actions or choices?

End stigma. All cancer patients deserve compassion.

First-ever NCI Facebook Live for Lung Cancer Awareness Month 11/17 8 pm ET

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Hope you will join the lung cancer community tomorrow 11/17 at 8pm Eastern for the first-ever Lung Cancer Awareness Month Facebook Live event with the National Cancer Institute and the concurrent Lung Cancer Social Media (#LCSM) Chat on Twitter. We’ll be talking about immunotherapy and lung cancer clinical trials.

For more information, check out the Lung Cancer Social Media (#LCSM) Chat blog post for their 11/17/2016 chat.

 

In Remembrance of What Matters Most

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Today, people in the world may be shocked, sad, or grieving in response to events recent or remembered, people lost, and sacrifices made.

Having a terminal illness altered my perspective about what constitutes a disaster, and what matters most.

Stuff happens. We don’t control the universe. We don’t control how many days we have. We might not control where we live, who we live with, or whether others treat us well.

What we do control is how we choose to spend whatever time is given us.

Each day, I have another chance to feel (shock, sorrow, hope, compassion, whatever). Another chance to show love to family and friends. Another chance to use my body and mind as best I can. Another chance to laugh. Another chance to dream.

Another chance to use my unique set of skills, interests and resources to make a difference in the world.

Tomorrow is another day. How will you spend it?

Involving ROS1-Positive Cancer Patients in ROS1 Research

Hey ROS1ers: This is an IMPORTANT REQUEST!

We all want to find a CURE for our disease, right?

To do this, we need to know how many patients are willing and able to participate in research for cancer driven by ROS1 mutations. The results will hopefully motivate more patients to join us, generate more interest in collaborative ROS1 research, and attract more funding to ROS1 research.

PLEASE COMPLETE THIS BRIEF 10-QUESTION POLL AS SOON AS POSSIBLE. Just click on the link below to get started! It only takes about 5 minutes. Results of the poll will be posted on the ROS1cancer website, and the Bonnie J. Addario Lung Cancer Foundation (ALCF) ROS1 website.

SurveyMonkey Poll: Patient Interest in ROS1 Cancer Research

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AND …

If you haven’t already, please complete the ROS1 patient survey on the ALCF ROS1 website. We need more responses–COMPLETE responses (all questions answered)–to have statistically valid data. It’s a long survey (might require an hour), but the length is necessary to accomplish its goals. The survey examines ROS1 patients’ diagnosis and treatment journey, family cancer history, patient exposure to toxic environments and materials, and other factors that might have contributed to the development of ROS1 cancer. A poster about the survey was presented at the IASLC Chicago Multidisciplinary Symposium In Thoracic Oncology in September 2016. The preliminary results of the survey will be presented at the IASLC World Conference on Lung Cancer in Vienna in early December 2016.

Let it begin with us

Our country has been deeply divided about genuine issues before. One time it caused a Civil War. Let’s not let it go so far this time.

Regardless of why people voted the way they did, we still have to live together. We all must move past hatred, anger, and fear before the country can heal.

Let it begin with us. 

Share views using words that demonstrate respect for others, even when you don’t feel it. When you disagree, take the high road no matter which road they choose. Seek first to understand before being understood.

Show each person you meet what compassion feels like. You may be surprised how good you feel.

Prayer for a time of transition


I pray for our country in this time, in this delicate time.

I pray we can peacefully agree on ways “to form a more perfect Union, establish Justice, insure domestic Tranquility, provide for the common defense, promote the general Welfare, and secure the Blessings of Liberty to ourselves and our Posterity.” (credit: US Constitution)

I pray all will hold these truths to be self-evident: that all humans are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.  (credit: US Declaration of Independence)

I pray our federal and state governments shall make no law respecting an establishment of religion, or prohibiting the free exercise thereof, or abridging the freedom of speech, or of the press; or the right of the people peaceably to assemble, and to petition the government for a redress of grievances. (credit: US Bill of Rights)

I pray the rule of law will continue to be upheld as our standard of justice.

I pray hatred and resentment will be replaced by compassion for all and a desire for community.

I pray all people, including those stricken by cancer and other health conditions, will be able to afford good healthcare.

I pray those who came to this country legitimately in search of a better life will not be forced to leave without good reason.

I pray no one will be ridiculed, bullied or threatened because of their disability, ability, appearance, race, gender, creed, religion, ethnicity, or country of origin.

I pray our leaders and citizens will carefully consider the long-term consequences of their actions and words, and will find rational, realistic solutions to the serious and complicated issues facing us.

I pray other nations will see this country as an example of best democratic and diplomatic practices, and a leader worthy of respect and emulation.

I pray one day we can all agree with these sentiments.