Be the Change

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The USA is being sorely tested.  Now is the time to show the power of our Constitutional form of goverment.

Regardless of whether I voted for an incoming US President, I believe in our election system and the US tradition of a peaceful transition of power. That tradition deserves respect. Not all nations give their citizens that option.

If our government and its systems have flaws, then state your objections and use our participatory system of government to fix it. Don’t use rage and violence to make your point–that will not erase hatred or make any positive, lasting change.

People, you can do more than exercise your Constitutional right to peaceful protest.  Remember also to exercise your right to pursue lawful change as laid out by the US and State Constitutions.

Along the way, teach compassion and respect by showing them to others.  Show the world why a Constitutional form of government is desirable.  BE THE CHANGE.

Dear Congress: Please Consider Lifetime Caps and Pre-Existing Conditions Carefully

Dear Congress:
Some voters say they don’t want the government or insurance companies to spend THEIR money on other people’s healthcare.  They think repealing the Affordable Care Act will fix all their healthcare problems.
They probably are not aware that “other people” will likely include them or someone they love at some point.  All of us risk the ravages of accidents, illness, and age, and 39% of US citizens will get cancer in their lifetimes (per the NCI’s current SEER data).
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Before the ACA was implemented, cancer was a “pre-existing” condition that prevented anyone who’d had it from obtaining health insurance, and most healthcare plans had “lifetime caps” on how much they would spend on individuals.  My exceptionally great employer-provided health plan’s lifetime cap was $250,000 before the ACA.
My insurance company was billed more than $250,000 during my very first year of advanced lung cancer (I was diagnosed May 2011).
If the lifetime cap and pre-existing conditions clauses were in place last year, I would have lost my health insurance, and likely would have no option to buy more. I would have been responsible for paying about $98,000 in 2016 alone in billed healthcare services and treatments (assuming I could still get my targeted therapy cancer drug free through a clinical trial). That’s despite not having other major health issues last year, like hospitalization for pneumonia or cancer treatment side effects.

I know the ACA is not perfect. I applaud any effort that will improve healthcare coverage in the US.  But repealing the ACA without a suitable replacement is not going to solve our health care crisis.

If you allow pre-existing conditions and lifetime caps to be reinstated, you will be forcing an estimated 14,140,254 cancer patients to choose between bankrupting their families, or foregoing treatment (and probably dying).

One of those people will be your constituent … or even someone you love.
Please consider your healthcare options carefully.  The life you save may be your own.  A six-figure salary is peanuts compared to cancer treatment.

#CureChat 1/12: A conversation about precision medicine and clinical trials

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I am honored that I was asked to be the featured guest for the #CureChat on Twitter this Thursday, January 12th, 2017 at 1 pm ET.  We’ll be talking about precision medicine and clinical trials.  You can read more about it on the Cure Forward blog.  Hope you can join us!

Chat Topics (from the Cure Forward blog):

T1. Janet Freeman-Daily’s Story (my lung cancer story, told 140 characters at a time)

T2. What does the term “precision medicine” mean to you and how does it connect to clinical trials?

T3. Tell us about the ROS1 Mutation.

T4. What were your biggest fears and misconceptions about clinical trials before finding out about them via an online community?

T5. How did it feel to be accepted into a trial? What emotions, and why? And how did you manage them?

T6. What are some of the positive aspects of clinical trials that most people don’t know about?

T7. Please share some online resources where you find trustworthy info for lung cancer and clinical trials.

You can follow the conversation in Twitter by entering “#CureChat” in the search box to filter tweets.  However, if you haven’t joined a tweetchat before, you may find the conversation easier to follow if you use a tool designed for tweetchats, such as tchat.io.  To use tchat.io, do the following:

  • Login to Twitter (you must have a Twitter account to do this)
  • Type “tchat.io” in the URL of your browser, then hit the “enter” key. The tchat.io entry page will appear.
  • Type “#CureChat” in the box that says “enter hashtag,” then left-click on the colored box that says “Start Chatting.” You will be taken to a page that has a big blank textbox at the top, and a list of recent tweets that contain the hashtag “#CureChat” below.
  • Left-click on the link just below the textbox that says “sign in.” A popup window will ask if you want to authorize tchat.io to access to your Twitter account. Left-click on the box that says “authorize app.” You will return to the tchat.io page.
  • Left-click on the link above the textbox that says “hide retweets.” This will eliminate duplicate tweets and make the conversation easier to follow.

Now you can follow the #CureChat conversation on the tchat.io page.  If you want to contribute to the conversation, type your own tweets into the textbox at the top of the page.  Tchat.io will automatically add the hashtag #CureChat to the end of your tweet so your tweet will appear in the conversation.

However you choose to follow the chat, if you want to respond or direct a question to someone in the chat, be sure to include their Twitter handle (e.g., @JFreemanDaily is my handle) at the beginning of your tweet.

Thanks to Liza Bernstein (@itsthebunk) and the Cure Forward team for inviting me to be their guest in this chat.  I look forward to seeing you on Thursday!  I will post the link to the Storify summary of the chat HERE once the Cure Forward team posts it.

 

Who are Cancer Clinical Trials For? (a reblog)

Cancer clinical trials can be a good treatment option.  Today I’m giving a signal boost to a great post on CURE Today by my amazing clinical trial oncologist, D. Ross Camidge, MD, PhD, at University of Colorado.  He’s written a nice overview of the benefits and pitfalls of cancer clinical trials for patients.

Who are Cancer Clinical Trials For: Guinea Pigs, Test Pilots or Prize Poodles? 

About that conspiracy to hide the cure for cancer …

Reality check: No one is hiding THE ONE CURE for cancer.

There will not be one treatment to cure all cancers, because each case of cancer is as unique as the person whose cells mutated to create it.

We’ve been curing cancer in groups of mice and lab containers for decades. However, the human body–and therefore each cancer it generates–is more complicated than a mouse or cells isolated in a petri dish.

Each cancer is a unique living organism that can mutate and evolve over time. Just like its host, a cancer’s characteristics and behaviors are influenced by genetics, environment, nutrition (what it consumes to make energy), and exposure to infectious diseases and toxins (and probably other factors we haven’t discovered yet).

If anyone had run a study in humans that proved a single cure worked for every case of cancer, no one could hide it. No one could silence the millions of joyful, grateful patients who had been cured by it.

Enough with the cancer conspiracy theories, people.  Accept that humans–and cancer–are complicated creatures, and get on with the research.  We cancer patients are waiting, and we don’t have the luxury of time.

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.