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.

 

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.

Four years on a cancer clinical trial, and still NED–yay for research and hope!

Four years ago today, I took my first dose of crizotinib in a clinical trial for patients who had ROS1-positive lung cancer. My first scan–and every scan thereafter, including this past Monday 10/31– has shown no evidence of disease (NED). Not bad for a metastatic lung cancer patient who previously progressed on two separate lines of combined chemo and radiation.

I’m very grateful for cancer research and the availability of clinical trials. We’ve had more new drugs approved in the past five years than in the previous five decades!

During November, which is Lung Cancer Awareness Month (#LCAM on Twitter), please consider donating to your favorite lung cancer research facility (one option is the Lung Cancer Colorado Fund at the University of Colorado) or a lung cancer advocacy organization that supports research. 

And for a bit of hope, check out the NEW LCAM website, which represents a partnership among 19 lung cancer advocacy organizations led by the International Association for the Study of Lung Cancer (IASLC).

 
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HOPE LIVES! More research. More survivors.

Your Life, Your Choices — A Conversation

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If you live in the South Puget Sound area of Washington State, and are interested in starting a conversation with family members about what’s important to you when you think about the end of life (which comes to all of us, though we know not when), please join us on Sunday, October 9, 2016, at Calvary Lutheran Church in Federal Way, Washington, at 2 PM for a free two-hour workshop.  Ann Hagensen, RN, FABC, (Virginia Mason Medical Center) will be presenting materials based in part on The Conversation Project. She will be joined by Karen Freeman Worstell (transformational grief coach and founder of NarrowBridge Solutions), Pastor Lori Cornell (of Calvary Lutheran Church), and myself.

This is a topic of vital interest to me, and not just because I have metastatic cancer.  I have extensive experience exercising durable power of attorney and navigating communications between family members over estate and end-of-life choices. I know friends who had serious accidents or died unexpectedly without having these conversations with their loved ones, and as a result their family members were completely unprepared for the decisions they faced. Because this is so important to me, I serve as an advocate on regional and statewide initiatives to identify and honor patient goals of care and end-of-life wishes.

I hope you’ll join us!

Lung Cancer Update: August 2016

I haven’t blogged much about my cancer status or advocacy activities in 2016.  Not to worry — I’m still dancing with NED (No Evidence of Disease), still taking Xalkori (crizotinib) for my stage IV lung cancer, and still advocating for improved outcomes and quality of life for lung cancer patients.  Life has just been amazingly, overwhelmingly busy up through July, and my blogging became one of the dropped balls in my juggling act.

How busy, you ask?  Here’s a summary of the past nine months. The numbers are estimates, as I had trouble reading the small print I had to use on my calendar to fit everything in.

  • Traveled 54 days for advocacy and writing
  • Traveled 28 days for my clinical trial in Denver (and got snowed in once)
  • Gave 25 formal presentations or informal talks
  • Presented a poster at a medical conference (in AACR Scientist-Survivor Program)
  • Attended 7 medical conferences
  • Attended a 5-day writers’ retreat (wrote a new short story!)
  • Participated in working groups for 3 healthcare agencies (including the National Cancer Institute)
  • Attended 3 science fiction conventions
  • Worked on 2 patient-initiated research projects (ROS1, and biobanking tissue of deceased patients)
  • Consulted for 2 pharmaceutical companies
  • Moderated a joint #LCSM-National Cancer Institute Google Hangout on Air
  • Advocated at the US Capitol for more healthcare funding
  • Captained a team for a lung cancer fundraising walk
  • Co-moderated biweekly #LCSM twitter chats

And on the personal side …

  • Travelled 33 days with family
  • Purged unneeded books, college class notes, household items and cruft from 3 rooms
  • Helped my son find and move into a new apartment (twice)

Sometimes I was barely home long enough to unpack,  pile my collected travel papers on the floor, repack, and perform a couple of necessary household chores before flying out again.  Glad I’ve had a few weeks at home in July and August to decompress and spend time with my family.

While compiling the statistics for this post, I begin to realize why I’ve been so fatigued. I’ve never been particularly good at taking things slow. The above list demonstrates that I must fine tune my advocacy work in order to focus on my top priorities.  I need to say “no” to some opportunities so that I can have more time to process what I’ve learned and write. Juggling four conferences in April left me drained–one conference a month should do.  As my husband has reminded me more than once, I am a cancer patient as well as an advocate.

I’ve been attempting to exercise regularly, give myself enough hours in bed to feel rested, eat healthy, and stay hydrated.  Over the past nine months, my medical team and I have also made some tweaks to my treatment plan.

Less frequent scans. Sometime last year, I became eligible to increase the time between my scans for the clinical trial, but I was too anxious about my cancer possibly coming back to do it.  However, a long talk with fellow lung cancer activist (and 11 year survivor) Linnea Olson at the World Conference on Lung Cancer in September made me realize I was having a LOT of scans over the past years.  I realized reducing my exposure to radiation was probably a good thing.  So, as of November 2015–at three years of NED–I asked Dr. Camidge to schedule my scans for every sixteen weeks instead of every eight weeks (I wasn’t confident enough to go with every 24 weeks).  I’ve also switched from eyes-to-thighs PET-CT scans to chest and abdomen CT scans, primarily because insurance was denying coverage of the PET-CT scans.

Change of blood thinners.  At the beginning of 2016, I realized the frequent labs required to monitor my warfarin dose would be difficult to accommodate with all my upcoming travel. My Denver and Seattle docs all agreed that my pulmonary embolism (remember that pesky blood clot in my lung’s artery?) probably didn’t represent an increased risk of blood clots from cancer, but instead was just a pile of fibrin sheaths that had sloughed off my power port’s catheter (I’m really good at growing fibrin sheaths).  So we switched me to a different blood thinner (Xarelto) that doesn’t require regular blood tests.  The downside of Xarelto is that it doesn’t have an antidote if I happen to overdose.

Crizotinib is approved! Do I stay in the trial? In March 2016, the FDA approved my clinical drug crizotinib for ROS1-positive lung cancer patients–YAHOO!  This meant I had the option of leaving the trial and eliminating my travel to Denver while continuing to stay on the wonderful drug that’s keeping my cancer in check.  I thought long and hard (with the help of a great blog from my friend Dann Wonser). Eventually decided I wanted to keep seeing one of the world’s top lung cancer docs (Ross Camidge) in Denver, despite the cost and hassle of travel. I love being a part of the University of Colorado (CU) lung cancer SPORE, and I’ve grown close to many people at CU. The trial will likely continue for a few more years; the crizotinib trial for ALK-positive lung cancer started in 2008 and is still ongoing. So. I’ll keep traveling to Denver for the foreseeable future–which is much shorter nowadays than when I was 20.

Regaining my balance.  After my three falls in nine months, I had several sessions of physical therapy to strengthen my leg and core muscles. It improved my balance and helped me get back into exercising.  Alas, I fell again at a conference earlier this month.  **grumble** I’ve become a klutz in my old age.  At least I’m around to see what my “old” looks like.

Dose reduction of crizotinib. I’ve struggled with swelling of my legs and belly–edema, a known major side effect of crizotinib–since my second month on the drug. Alas, it’s gotten worse with time.  As of January, I couldn’t bend my ankle at the end of the day if I didn’t wear my thigh-high compression hose and take a diuretic (Lasix).  My weight can go up by eight pounds in two days solely from water retention. I’m told edema is the reason patients most often cite for stopping crizotinib therapy.  Dr. Camidge first offered me a dose reduction of crizotinib last year (from 250 mg twice daily to 200 mg twice daily), but I didn’t want to reduce the dose while I was also increasing time between scans–much too anxiety-making for me.  However, in July 2016 I’d had enough of puffy feet and legs, and decided to try the lower dose. Dr. Camidge says he wouldn’t lose a second of sleep over the dose reduction, because he’s seen the lower dose work for many patients. I think it’s helping me.  I can always increase the dose again in the future if necessary, although I’d have to leave the clinical trial if I did.

I’m de-ported! I’ve kept my power port while on oral meds, although I only use it for blood draws and scan contrast. The docs have always said it’s my choice, so I’ve left it in because it was easier than getting stuck every month (and my veins tend to misbehave).  At my June 2016 clinical trial appointment, however, my power port decided it would cooperate with neither the blood draw nor the scan contrast. I’ve had the little beastie since December 2011, which is a good long run, but I finally decided it was time to pull it out.  The surgeon who installed it was thrilled to be taking it out of a metastatic lung cancer patient more than four years later. So, as of July 21, I am no longer Borg.  Now that I no longer have a catheter in a vein, I probably won’t be forming piles of fibrin sheaths in my pulmonary artery.  My docs say if my next scan in October shows my pulmonary embolism looks good, I may even be able to go off blood thinners. Wahoo!

Coping with chemobrain.  My continuing fatigue and mental fuzziness are a great frustration. Caffeine and exercise help, but don’t eliminate the problem. I finally asked my oncs what could be done, and they both suggested Ritalin, a stimulant commonly used to increase ability to attend for people who have ADHD.  I take 5 mg twice daily on days when I need energy and focus (especially useful at conferences and speaking events).  However, it masks how tired I truly am, and results in something of a crash when I stop taking it.  I’ll be visiting a neuro-oncologist soon to explore other medication options–Dr. Camidge mentioned Provigil (a narcolepsy drug) and Effexor (an antidepressant) as possibilities, and another patient said she found Concerta (long-acting Ritalin) helpful.

So, that’s what happening with me.  I promise to blog a bit more often so I won’t have as much news the next time.

Lung Cancer Town Meeting Sept 10: “Getting the Right Testing and the Right Treatment at the Right Time”

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If you or someone you know is a lung cancer patient or caregiver who wants to learn about “Getting the Right Testing and the Right Treatment at the Right Time,” check out this Lung Cancer Town Meeting in Chicago on September 10th (FREE in person or live online). I’ll be hosting several doctors from Northwestern’s Lurie Cancer Center AND my oncologist Dr. Ross Camidge.

AGENDA (Central Time)

9:30 – 10:00 AM Registration | Connecting With Other Lung Cancer Patients and Care Partners
10:00 – 10:45 AM Current and Novel Treatment Options for Lung Cancer
10:45 – 11:30 AM Understanding Biomarker Testing in Lung Cancer
11:30 – 11:45 AM Meet the Patient Panel
11:45 – 12:30 PM Lunch Provided
12:30 – 1:00 PM Resources and Strategies for Living Well With Lung Cancer
1:00 – 2:00 PM Interactive Q&A Session
This in-person town meeting is sponsored by the Patient Empowerment Network through educational grants from Helsinn, Genentech and Novartis, with additional funding from LUNGevity Foundation through an educational grant from Pfizer. It is produced by Patient Power in partnership with the Robert H. Lurie Comprehensive Cancer Center of Northwestern University and LUNGevity.  Thanks to Patient Power for inviting me to host it.
You can register by clicking here.  Hope to see you in Chicago September 10!