Today the National Cancer Institute published this blog about the ROS1ders on the Center for Cancer Genomics “Insights and Innovations” blog. The Global ROS1 Initiative is underway! I’m glad I was able to help share our story.
ROS1+ Cancer Patients Partner to Increase Research
In May 2015, I met four friends in a bar near Washington, D.C., to talk about not dying of cancer.
This conversation planted a seed that has grown into The Global ROS1 Initiative, a patient-researcher partnership that is redefining research into ROS1-positive (ROS1+) cancer. The Initiative includes a group of over 150 patients in 19 countries; two patient-focused foundations, Bonnie J. Addario Lung Cancer Foundation (ALCF) and Addario Lung Cancer Medical Institute (ALCMI); academic cancer researchers; and industry. The Initiative includes more than twice the number of patients enrolled in any ROS1 clinical trial thus far.
How did this happen? Let’s return to the bar. Read More …
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
July 1, 2017
- 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 firstname.lastname@example.org and include the following:
- Your personal essay (as an attachment)
- 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.
- 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:
- Janet Freeman-Daily (blog: Gray Connections)
- Lisa Goldman (blog: Every Breath I Take)
- Linnea Olson (blog: life and breath: outliving lung cancer for the terminally optimistic)
- Tori Tomalia (blog: A Lil’ Lytnin Strikes Lung Cancer)
- Ann Vandermeer, professional editor
Last update: 6-Mar-2017 16:00 Pacific Time
Below is my MidAmeriCon II speaking schedule: a couple of cancer panels, a couple of space panels, and a reading (yes, something new). Come find me at the Kansas City Convention Center August 17-21 and say hello!
Living with Cancer
Wednesday 8/17/2016 14:00-15:00, 2206 (Kansas City Convention Center)
$£%* Cancer. Our panel talks about the experience of cancer, how it affected their writing and lives, and how we can support the fan community.
Janet Freeman-Daily, Rosemary Kirstein, Ms Pat Cadigan (M), Priscilla Olson
Reading: Janet Freeman-Daily
Thursday 8/18/2016 16:30-17:00, 2202 (Readings) (Kansas City Convention Center)
Defining Acceptable Risks in Space Exploration
Friday 8/19/2016 11:00-12:00, 2502B (Kansas City Convention Center)
The further we move into deep space exploration the more we have to ask, to what extent it can be risk-free, or at least risks limited. We consider the risks, what can be done to guard against them, and how much risk do humans need to accept — at least in the early stages.
H.G. Stratmann (M), Henry Spencer, Jerry Pournelle, Janet Freeman-Daily, Frank Wu
Space Technology Spinoffs
Saturday 8/20/2016 16:00-17:00, 2210 (Kansas City Convention Center)
There have been some 2,000 technological products, inventions and ideas trasferred from NASA missions to commercial products and services. Of these, many have made life on Earth better in the fields of health and medicine, transportation, public safety, consumer goods, energy and environment, information technology, and industrial productivity. Panelists discuss their favorite examples of space technology spinoffs.
Mrs. Laurel Anne Hill, Les Johnson, Janet Freeman-Daily (M), Joy Ward, Brenda Cooper
Sunday 8/20/2016 10:00-11:00, 3501H (Kansas City Convention Center)
In the last year fandom has lost many good people to cancer – both fans and creators. Many members of our community are currently being treated or are in remission and more people get diagnosed everyday. Our experts have an informal discussion about how cancer is currently treated and what it will look like in the future.
Janet Freeman-Daily, Dr. Ronald Taylor
You can also visit my official schedule page on the MidAmeriCon II website.
This past week I attended the Rainforest Writers Village with twenty or so other science fiction writers. The resort where we stayed is on the southeast tip of Lake Quinault, adjacent to the southern border of the Olympic National Park in Washington State. It was quiet, beautiful, and slow-paced—the perfect place to take a break from everything and focus on my writing.
After lunch the first day, I decided to take a meditation walk along the lakeshore in hopes of absorbing some of the abundant tranquility. When I walked this same path 14 months ago (December 2014), Washington was experiencing a drought. This year, we’d had our wettest winter EVER, and the level of the lake reflected the additional rainfall. Tree roots normally anchored on the mossy bank now stood in a couple of feet in water.
The first hours of the retreat were graced with several downpours, but for the moment, the rain had stopped. I took deliberate steps along the soggy pathway, carefully placing my feet to avoid adding another fall to my medical file. I concentrated on taking slow, deep breaths. Gradually my thoughts came to rest in the moment. I smelled the surrounding evergreens, felt the moist rainforest air, heard the enthusiastic creek swollen with runoff, saw a raven stepping carefully on puddled lawn.
I meandered past deserted trailer slots and a closed bathhouse to the end of the campground, where stood the World’s Largest Sitka Spruce Tree. There I encountered a couple of other writers who were also taking a break from their labors. We imagined the tree was lonely and had called for company. Eventually, the others wandered off, leaving me alone with the tree, and my thoughts.
Despite hundreds of droughts and downpours, the thousand-year-old giant before me stood firmly anchored in the earth, continually adding rings to its impressive girth. The diameter of its trunk exceeded twice my armspan, and the massive roots spread at least twice again as far.
Standing under its broad arms, dwarfed by its great size and age, I was struck by … Read more
The Norwescon 39 Science Fiction Convention happens March 24-27, 2016, in SeaTac, Washington. I will once again be a science panelist. You can find me on the panels listed below, or maybe hanging out in the bar with other writers and science geeks, scarfing down a snack in the Green Room, or wandering the corridors on my way to the art show, dealers room, a friend’s reading, or an interesting panel. hope to see you there!
BIO21 – Blinded by Pseudoscience
Fri 6:00 PM-7:00 PM – Cascade 3&4
Gregory Gadow (M), Janet Freeman-Daily, Caroline Pate, Dr. Misty Marshall, Jake McKinzie
TEC05 – Real Radiation for Writers & Readers
Fri 8:00 PM-9:00 PM – Cascade 5&6
Mike Brennan (M), Janet Freeman-Daily, Arthur Bozlee, Daniel P. Lynge
BIO20 – Facts & Fictions of Cancer
Sat 1:00 PM-2:00 PM – Cascade 5&6
Janet Freeman-Daily (M), Dr. Misty Marshall, Vickie Bligh, Nicholas Maurice
BIO16 – Ask the Experts: Biology
Sat 2:00 PM-3:00 PM – Cascade 5&6
Alan Andrist (M), Janet Freeman-Daily, Caroline Pate, Dr. Misty Marshall, Nicholas Maurice
TEC01 – Remembering In Tomorrow
Sat 7:00 PM-8:00 PM – Cascade 9
Sean Hagle (M), Janet Freeman-Daily, Michael Ormes
BIO19 – Evolution Is Just a Theory!
Sun 10:00 AM-11:00 AM – Cascade 5&6
Dr. Ricky (M), Janet Freeman-Daily, Alan Andrist, Michael McSwiney, Jake McKinzie
BIO03 – Future Pharma
Sun 2:00 PM-3:00 PM – Cascade 5&6
Janet Freeman-Daily (M), Caroline Pate, Vickie Bligh, Nicholas Maurice
As Lung Cancer Awareness Month (November) grows nearer, patients and advocates become more focused on how to raise awareness of our disease. But what should we say to have the most impact? What “talking points” and tips do successful advocates use in writing, interviews, and public speaking?
The October 22 #LCSM Chat at 8 PM ET (5 PM PT) will discuss the most effective ways to share our patient and caregiver stories as we work to raise awareness of our disease in the media, online, and in person. Although our focus will be on lung cancer, the concepts will be applicable to advocates for any cancer or serious disease. Our moderator will be Janet Freeman-Daily, who has spoken to patient groups, industry, researchers, medical meetings, and the President’s Cancer Panel. Other experienced advocates such as LUNGevity’s Katie Brown (@brownbeansprout), lung cancer blogger Tori Tomalia (@lil_lytnin), and breast cancer survivor Casey Quinlan (@MightyCasey) will also share their knowledge.
These topic questions will guide the conversation:
- Which aspects of your #cancer experience do you include when sharing your story? How do you make it an interesting narrative?
- What key facts about #lungcancer do you ensure you weave into your story? Does this change over time?
- Any tips for tailoring an advocate presentation to different audiences, article/speech length, or types of media?
- How do you make contact with potential speaking, online and print publication opportunities?
For a primer on how to join #LCSM chat, check out How to Participate in LCSM Chat.
This content was reblogged from the LCSM Chat website (with permission).
Here is my schedule of events next week for Sasquan (the 73rd World Science Fiction Convention) in Spokane, Washington. Hope to see you there!
Thursday 8/20 15:00 – 15:45, 202B-KK4 (CC)
Friday 8/21 11:00 – 11:45, 302AB (CC)
Anne Hoppe (M), Frank Catalano, Janet Freeman-Daily, Charlotte Lewis Brown
Blinded by Pseudoscience
Friday 8/21 15:00 – 15:45, 300D (CC)
Sam Scheiner (M), Janet Freeman-Daily, Gregory Gadow, G. David Nordley, Alvaro Zinos-Amaro
Fanwriting from Twiltone to Facebook: Zines, Blogs, Social Media — What’s the Diff?
Sunday 8/23 14:00 – 14:45, Bays 111C (CC)
Janet Freeman-Daily (M), Mike Glyer, Catherynne M. Valente, Jim Wright, Megan Frank
On Tuesday November 18, 2014, at 3 PM Eastern Time, the WEGO Health Activist Twitter Chat (#hachat) will focus on lung cancer in honor of Lung Cancer Awareness Month. I will be the guest host along with three other guests, all lung cancer bloggers: Linnea Duff (
@1111linno), Samantha Mixon ( @mixon_Samantha), and Tori Tomalia ( @lil_lytnin). I’ll pose six questions to help our guests and chat participants discuss their lung cancer advocacy efforts on blogs and social media.
- Q1: Why do you share your lung cancer journey online? What motivates you to write a post?
- Q2: What kind of info do mbrs of online lung cancer community want? What messages do you try to convey?
- Q3: On which social media sites do you share lung cancer info? How do you choose what info to share on different sites?
- Q4: How/where do you find content about lung cancer that you want to share? What makes content you find share-worthy?
- Q5: How has the lung cancer information you share changed over time?
- Q6: What reactions do you get to your lung cancer blogs and social media posts? What content gets viewed or “liked” most?
Hope you will join us on Tuesday, whether you choose to actively participate in the chat or just watch. Remember to include #hachat in your tweets. For more information about how to participate in a tweetchat, check out the tutorial at the #LCSM Chat website (remember to #hachat instead of #LCSM as the hashtag for this chat).
Read the Storify summary of this chat here.
Today is a relatively typical day. I’ve been up for 2.5 hours. I haven’t tackled any major projects yet. Why?
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
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
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
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 …