Life Between Scans: Call for Submissions

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We are happy to announce a new upcoming anthology tentatively titled “Life Between Scans: How to Live with Lung Cancer as a Chronic Illness.”  Its personal essays will show how metastatic lung cancer patients and their loved ones cope with the emotions and situations that arise when you’re taking new precision medicine treatments and know your lung cancer could become terminal at any time.

A group of award-winning lung cancer bloggers is developing this book to share honest personal experiences, offer hope for those dealing with metastatic lung cancer, raise awareness and positive impressions of our disease, and encourage investment and participation in lung cancer research and supports.  These stories will highlight lung cancer patients on precision medicine approved drugs and clinical trials who are living well for months or years longer than those on traditional chemotherapy.

All submissions will be reviewed by the group, with assistance from editor Ann Vandermeer, who has extensive anthology publishing experience both for New York publishers and as a freelancer. Ann has graciously donated her time to this project in support of cancer patients.

Example Essay Topics (not a complete list)

  • The shock of diagnosis or cancer progression
  • Handling stigma and guilt
  • Taking care of yourself (as patient, or as caregiver)
  • Telling (or not telling) others about the cancer
  • “Why me?”
  • Making the choice to live despite the downsides
  • What matters most now? How has that changed after cancer?
  • Making major treatment and care decisions
  • Finding the next step for treatment
  • Why you did (or didn’t) join a clinical trial
  • How manage emotions: anxiety, fear, uncertainty, depression, need for control
  • Becoming an engaged patient or advocate
  • Dealing with symptoms or side effects (pain, cognitive issues, losses, etc)
  • Having “The Conversation” with family about end of life
  • Being the first on a new treatment
  • When your doctor doesn’t have much experience with your treatment or cancer
  • Finding supports or dealing with loss of supports (e.g; loss of friends)
  • Use of complementary therapies (massage, acupuncture, meditation, etc.)
  • Transitioning to hospice
  • Navigating the healthcare system (e.g., coordinating specialists)
  • Effective communication with healthcare providers
  • Value of patient communities
  • How to stay on top of science and research without getting overwhelmed
  • How do you forget about cancer and enjoy life in the moment?
  • Role of the care partner in chronic disease management
  • Financial toxicity
  • How can caretakers and patients both speak honestly about how they feel?
  • Humor as a diversionary/coping mechanism

Submission Deadline

July 1, 2017

Submission Guidelines

  • Essays should be between 750 to 2,500 words. Accepted file types are MS Word, .rtf, and .txt. Please use 12 point Times New Roman font, double spaced, and ensure your legal name is included at the beginning of the file.
  • Essays must be written in first person, and should reflect actual personal experience of either a metastatic lung cancer patient or a primary caregiver of a metastatic lung cancer patient.
  • Essay can be either original work not previously published, or material you personally published on your online blog or in an online support group.
  • Essays from deceased patients may be submitted if the patient meets the criteria above AND the person who is submitting can demonstrate they have the legal right to submit the essay.
  • If a metastatic lung cancer patient/caregiver blog post has touched or inspired you, please submit a link via email so we can review it and contact the author.
  • Each submission will receive an email acknowledging its receipt

Rights and Payments

  • Acceptance decisions will be made by late summer 2017. If your submission is accepted, you will be notified by email along with a contract for consideration.  If you do not receive a notification by the end of September 2017, your work was not accepted for publication.
  • We will pay $0.10/word on final edited word count for nonexclusive worldwide right to print, republish, or reprint the complete anthology in any language or format. Payment will be made upon final edit.
  • Contributors will receive two copies of the book.
  • If authors have other questions about rights or payments, please contact us before submission. We want to make sure all concerns are addressed.

How to Submit

Send an email to lifebetweenscans@gmail.com and include the following:

  1. Your personal essay (as an attachment)
  2. A BRIEF biography (no more than 100 words) for inclusion in the book. At a minimum, this must include:
    • your name (a pen name is OK, but a real name will have more impact for readers)
    • date of diagnosis
    • type of lung cancer (as specific as possible)
    • where you live (state & country, with city if possible)
    • link to your blog or website (if you have one)

    You might also want to include your age at diagnosis, relationship status (married, single, committed partnership, etc.), ages of children at diagnosis, and clinic(s) where you were treated. This information can help inspire readers.

  3. For payment purposes, please provide the following in the body of the email:
    • your legal name
    • mailing address
    • preferred contact email
    • contact phone

Please be sure the contact email and/or phone will be answered even if you are unavailable.

Where will the book be published?

We are negotiating with a small press to get the book published.  We expect the book will be available in hardcopy and in electronic format from online sellers.

What will happen to the income from book sales?

One of our bloggers is funding this project personally. After the payments to authors and production costs are covered, proceeds from the sale of the book will be designated in perpetuity to support lung cancer research at the University of Colorado, one of the premier targeted therapy lung cancer research centers in the world.

Who is on the editorial board?

In alphabetical order:

Last update: 6-Mar-2017 16:00 Pacific Time

#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? 

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.

A Natural Remedy for Cancer Scanxiety (Almost)

When basking in the wonders of volcanoes, rainforests, and oceans, I can focus on something other than cancer for a while.

When heading to a cancer center for brain and body scans, not so much.

Still, facing the possibility of progression is easier when I’ve been immersed in nature for a few days.  I suspect most cancer patients might benefit from a “nature break” to combat scanxiety before a scan.

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.