Join the Life & Breath Rally for Lung Cancer in DC on Nov 2

Please register for your free ticket(s) here:
https://LABRally.eventbrite.com/  

Life & Breath (LAB) is a grassroots effort comprised of lung cancer survivors, caregivers, and advocates. We volunteer with various lung cancer organizations but have decided to come together as individuals for a common cause:

The Life & Breath Rally
Thursday, November 2, 2017, 11 a.m. – 1 p.m.
U.S. Capitol Building, Washington, D.C.

Email: lablifeandbreath@gmail.com
Facebook: https://facebook.com/lablifeandbreath/
Instagram: lifeandbreathrally
Twitter: @LABLifeBreath

Lung Cancer is a National Emergency and must be declared as such. This step will allow an increase in desperately needed research funding. We represent the 433 Americans who die every day because of this disease, the deadliest of all cancers. Our goal is to have enough participants to stage a die-in of 433 people. We need Congress to see what this disease actually looks like.

The Rally will be held in Area 1 on the Capitol grounds from 11 a.m. until 1 p.m. (see this linked map): https://www.uscp.gov/sites/uscapitolpolice.house.gov/files/wysiwyg_uploaded/U.S.%20Capitol%20Grounds%20Demonstration%20Area%20Map.pdf

Participants are encouraged to bring their own signs, posters, etc., to the Rally, with the understanding that these items may not be brought into or near the Capitol Building. Members of the media will be invited.

Speakers will include members of the Congressional Lung Cancer Caucus (Rick Nolan, Debbie Dingell, Jamie Raskin as of 10/18) with cooperation from the office of Congressman Nolan, founder and co-chair. Congressman Nolan’s daughter, Katherine Bensen, a Stage IV lung cancer survivor, will also be in attendance, as well as former NFL player and noted lung cancer advocate Chris Draft, who lost his young wife to the disease, and Greta Kreutz, former D.C. news personality and lung cancer survivor.

As this is an unbranded, grassroots event, participants are free to wear clothing representing their favorite lung cancer organizations, if desired. All organizations and their volunteers are welcome. There will be no fundraising as we are not a nonprofit nor do we represent one. Our goal is to provide a unified presence for the purpose of Lung Cancer advocacy.

Participants are encouraged to make appointments on their own to see their elected U.S. Representative and Senators to occur after 1 p.m. when the Rally is scheduled to conclude. We can provide an informational packet, or participants are free hand out their own organizations’ literature when these visits are made.
You can find your elected officials here: http://act.commoncause.org/site/PageServer?pagename=sunlight_advocacy_list_page

Getting to the Capitolhttps://www.visitthecapitol.gov/plan-visit/getting-capitol

Please contact us directly if you are interested in room and/or ride sharing. We will do our best to accommodate you.

Please register for your free ticket(s) here so we can get an idea of attendance numbers before the Rally: https://LABRally.eventbrite.com/  

This page will be updated on a regular basis, so check back often.

Please join us for this important event!

Lung Cancer Updates from 2017 ASCO Annual Meeting

Chemist Jean Cui with some lung cancer patient/advocates who have been treated with drugs she designed

Each year in early June the American Society for Clinical Oncology holds its Annual Meeting (called simply “ASCO”) in Chicago. The theme for the 2017 meeting was “Making a Difference in Cancer Care WITH YOU.” Over 39,000 cancer researchers, clinicians, patient advocates, and industry representatives from around the world gathered to discuss the latest scientific advances in cancer care, such as clinical trial results, new technologies, and best care practices.

WHAT HAPPENS AT ASCO?

ASCO takes place in McCormick Center on Lake Michigan in Chicago—few other conference centers are large enough to host it. My Fitbit claims I average five miles a day walking between sessions!  ASCO fills the hotel rooms throughout the city, some of them nearly 6 miles away, and runs a fleet of a more than a dozen shuttle buses to ferry attendees between their hotels and the conference center.

A typical day for researchers starts around 7 AM and finishes around 10 PM. Many sessions are happening simultaneously, and it’s literally impossible to attend all sessions that mention lung cancer. The poster sessions alone have hundreds of posters to view, and you likely run into people you know either presenting their poster or talking about someone else’s poster. Fortunately, those who register have online access to the videos, slides, and posters so they can catch the sessions they missed.

In addition to conference sessions, attendees can wander a HUGE exhibit hall filled with pharmaceutical firms, biotech companies, publishers, cancer advocacy groups, and vendors of support services.  Many attendees also schedule meetings with current or potential collaborators, funders, and trial sponsors, or are expected to attend one of the many cancer-related committee or steering group meetings that are held at a nearby hotel. Some patient advocates are so busy meeting with their grant recipients, researchers, and scientific advisory board members that they never get to attend a conference session! In the evening, attendees might attend a Continuing Medical Education meeting (complete with a free dinner), a reception hosted by an exhibitor or medical society, enjoy the many activities and entertainments Chicago has to offer, or meet with colleagues they only get to see at ASCO.

Below are highlights selected from over 2400 presentations relevant to non-small cell lung cancer (NSCLC), small cell lung cancer (SCLC), and mesothelioma. For more news from ASCO 2017, check out these resources:

Immunotherapy clinical trials

Lung cancer already has approved immunotherapy drugs, and new drugs are in development.  These drugs are relatively new, and we still have much to learn. Researchers are studying how to detect which patients will be most likely to benefit from them, when they should be used in the treatment sequence, how they might best be combined with other drugs and with each other, how to detect and manage potentially severe side effects, and when to continue or discontinue treatment. Experts are still debating about the value of immunotherapy for patients who have driving mutations.

TARGETED THERAPY CLINICAL TRIALS

Targeted therapy drugs bind to specific mutated proteins in cancer cells and inhibit the cell’s cancer-like behavior, instead poisoning both healthy and cancer cells as chemo does. Those that treat cancer for lung cancer are usually in a group called tyrosine kinase inhibitors (TKIs), and each drug targets genomic alterations in specific genes. In lung cancer, approved TKIs exist for alterations in EGFR, ALK, ROS1, and BRAF genes.  However, many more drugs are in clinical trials to target alterations in other genes such as HER2, MET, TRK, and RET, and research is being conducted on other genomic alterations as well.

Other Treatments

Cancer research involves more than just developing new drugs.  Clinical trials are also used to improve existing treatments.

Diagnostic Testing

Precision medicine means personalizing cancer treatment to a specific patient’s situation as well as their cancer’s characteristics.  In addition to presentations about treatments, ASCO has an increasing number of presentations about ways to identify the best cancer treatment for each patient, and to ensure patients get accurate and affordable diagnostic testing.

  • Biomarkers for immunotherapy: Several presentations explored “tumor mutational burden” (a measure of the number of mutation present in a cancer tumor) as a biomarker to indicate which patients might benefit from immunotherapy.  Other presentations sought to define how PD-L1 should be used to identify patients for immunotherapy. Some blood tests that look for certain proteins may be useful in identifying whether an immunotherapy is working before evidence is detectable on a scan.
  • Biomarkers for targeted therapy: Genomic testing of cancer tumors can identify patients who may benefit from targeted therapy. New technologies and methods are being evaluated to determine the most accurate and cost-effective testing methods. A French study of 1,944 patients (http://www.ascopost.com/News/55703) found widespread genomic profiling was feasible, but not all patients tested positive for a treatable mutation.
  • Liquid Biopsies: Several studies explored the value of ctDNA blood tests (one type of liquid biopsy) for early detection, monitoring patients for progression or recurrence, and identifying tumor characteristics that might be used to guide treatment. Several academic cancer centers are now using liquid biopsies to identify potential targeted therapies for a patient, with the understanding that such tests are have not yet achieved high accuracy. If the liquid biopsy results find an actionable mutation, they will prescribe the associated targeted therapy; if the tests are negative, many experts say they will pursue a tissue biopsy to validate the results. One study that used blood and urine tests to detect the T790M mutation found drug response to a positive tissue biopsy was similar to the response to a positive blood or urine biopsy (http://www.cancernetwork.com/asco-lung-cancer/plasma-urine-tests-can-help-detect-egfr-t790m-mutations-nsclc ).

Patient Care

Treating a cancer patient involves more than just prescribing a treatment that hopefully will shrink a tumor.  ASCO sessions also address ways to make patients more comfortable, deal with psychological needs, and improve communication between patients and healthcare providers. Patient reported outcomes (pat

  • Cost or financial toxicity of cancer care were topics in 174 sessions, some of which included patient advocates as presenters and/or panel members.
  • Goals of care discussions and shared decision making (both of which involve the patient as a member of their own care team) were topics in 21 sessions.
  • Patient reported outcomes (quality of life measures reported by patients to their healthcare providers) were the topic of 112 sessions.
  • Results from a clinical trial of 766 people with advanced cancer showed that a simple web-based tool can help patients live longer. The tool allows patients to report their symptoms in real time and then alerts their health care team if severe or worsening symptoms are reported.
    https://www.asco.org/about-asco/press-center/news-releases/web-based-system-self-reporting-symptoms-helps-patients-live
  • “Conquer Fear” face-to-face therapy program lowered fear of cancer recurrence more than relaxation training provided over the same 10-week period.
    http://abstracts.asco.org/199/AbstView_199_186249.html
  • An 8-week, web-based stress management program called STREAM lowered distress and improved quality of life for people newly diagnosed with cancer.
    http://abstracts.asco.org/199/AbstView_199_187932.html
  • Advanced cancer patients in a talk therapy program called CALM had fewer symptoms of depression and improved psychological well-being than those who received only screening for distress and basic psychosocial care.
    http://abstracts.asco.org/199/AbstView_199_193726.html

This document was distributed at the July 18, 2017 Bonnie J. Addario Lung Cancer Foundation’s Lung Cancer Living Room.

And they said streaming was easy …

I feel so 21st century. I’m streaming my first Amazon Prime movie on our home TV.  Not a bad bit of tech work for a 60-something.

It’s amazing how many choices, purchases, technologies, services, and connections this effort required:

  • research and buy a digital TV (years ago)
  • research and buy a Blu-Ray player (many months later)
  • research and contract with a high-speed Internet service provider
  • upgrade Comcast service to faster Internet
  • order upgraded cable modem from Comcast
  • activate new cable modem and upgrade its software
  • buy new Wi-Fi router with range and bandwidth to reach the TV
  • ensure I have all necessary cables (whoops, another trip to the tech store)
  • set up router
  • wire modem to router and confirm connection
  • set up home Wi-Fi network
  • wire TV to Blu-Ray player and confirm connection
  • connect Blu-Ray player to home Wi-Fi network
  • update Blu-Ray player software (from version 2007 to 2021)
  • use networked PC to subscribe to Amazon Prime
  • install Amazon app on Blu-Ray
  • find Amazon app amidst other apps on Blu-Ray player
  • login to Amazon app
  • use Blu-Ray player find and select a movie
  • start streaming …

… and discover that so many neighbors are streaming movies at the same time on Comcast that your movie won’t play.

Who knew home entertainment could be so complicated?

Good thing fixing healthcare only takes some quick legislation.

Submission Deadline for “Life Between Scans” Anthology is July 1!

Have a story about living with metastatic lung cancer on targeted therapy (as a patient or caregiver)? Submission deadline for the Life Between Scans anthology is July 1!
Submissions guidelines are here:

The start of something big …

I’m excited to be one of the handful of patients speaking in a public forum tomorrow evening at The Broad Institute in Boston, Massachusetts (well, technically, Cambridge). We’ll be sharing our “Lessons for Creating Patient­‐Researcher Partnerships to Accelerate Biomedical Progress.” I get to talk about the founding of the ROS1ders and the Global ROS1 Initiative.

A host of engaged patients, cancer researchers, and other healthcare types, among them the American Society for Clinical Oncology and the Biden Cancer Initiative (which grew out of the Cancer Moonshot) will be there. This could be the start of something BIG. At a minimum, it will spontaneously generate a HUGE group hug with advocate friends old and new.

Coincidentally, we’ll be staying at a hotel just a few blocks from my old MIT dorm during MIT Reunion Weekend.  I’ll be too late for reunion festivities–attending the ASCO Annual Meeting last week took priority.  Still, I’ll wander over on my knee scooter (still healing after foot surgery) in the 90º-plus heat.  I ought to be able to reflect on my crazy undergrad days on Third East in the East Campus dormitory for at least five minutes before seeking refuge inside an air-conditioned building.  Next year I plan to indulge in my 40th MIT Reunion–I didn’t expect to live long enough to see it, and I’m going to take full advantage of the the opportunity!

Did Lung Cancer Claim Your Loved One? Invest 20 Minutes to Help Researchers Find New Treatments!

If your loved one was treated for lung cancer at a community hospital, and has since died, you can help find new lung cancer treatments that might spare other families the anguish you’re feeling.

Lung cancer is the biggest cancer killer. Fortunately, researchers have discovered several new therapies that are helping to turn metastatic lung cancer into a chronic illness instead of an automatic death sentence.  Some of these therapies are effective for 70-80% of patients whose tumors have certain biomarkers .

Unfortunately, not all types of lung cancer have such effective treatments — yet.  Researchers need to find more lung cancer biomarkers and develop more drugs to target them. Discovering these biomarkers and new therapies requires studying LOTS of lung cancer tumor tissue.  If more tumor tissue from different patients were available for researchers to study, we might find new biomarkers and effective targeted therapies faster.

How can I help?

If your loved one was treated for lung cancer at a community hospital, and has since died, you can help by donating your loved one’s archived tumor tissue. 

Researchers usually obtain tumor tissue from lung cancer biopsies and surgeries performed at their academic cancer centers.  However, most lung cancer patients (about 80%) are treated at community and clinics, not academic cancer centers.  Those hospitals generally just archive any tumor tissue that is not needed for guiding patient care, and destroy those tissues five to ten years after the patient has died.  This means a lot of tumor tissue that could be used for finding new lung cancer therapies never gets to researchers.

The National Cancer Institute’s Lung Cancer SPORE at the University of Colorado (I’ll call it CU Lung SPORE for short) aims to help lung cancer researchers find cures faster.  Like other NCI SPOREs, CU has a biorepository (some people may call it a biobank) where they store patient specimens and medical records.  The biobank provides the tissues along with the important clinical background to scientists studying new ways to treat lung cancer, not only from the University of Colorado, but to institutions all around the country. Researchers can search for available specimens and request them for research projects.

The CU Lung SPORE created a pilot study to collect archived tumor tissue and medical records of deceased lung cancer patients, and place these in their biobank so that researchers can use them.  This study focuses on deceased patients because they have no further need of the tissues (living patients may need their specimens for tumor testing later).  The study needs five to ten more family members to submit signed release forms so we can complete the pilot study and assess whether this a feasible way to gather more lung cancer tumor tissue for research.

HIPAA laws forbid a research center from asking patients or family members about donating tissues and medical records if the patient wasn’t treated at their facility. But advocates (like me) CAN ask.

What do I have to do?

To participate, all you need do is:

  • Download the release form (by clicking on this link Family member Release Form (revised 2016-06-23) and fill in some information about you, your loved one, and where your loved one was treated,
  • Sign the release form, and
  • Mail the completed, signed release form to:
    • Mary K. Jackson
    • Team Manager – Specialized Program of Research Excellence [SPORE]
    • University of Colorado Cancer Center
    • 13001 E 17th Place MS B-189
    • Aurora, CO 80045

Filling in the release form only takes about 20 minutes (assuming you have to look up the contact information for the hospital).  Pretty easy, isn’t it?

What happens next?

The SPORE will contact the hospital where your loved one was treated and request your loved one’s archived tissue and medical records. Once these documents are received at CU, they will be reviewed by the study team, de-identified (which means personally identifying information is removed), and placed in the CU Lung SPORE’s biobank.

THAT’S IT!

PLEASE consider donating your deceased loved one’s archived lung cancer tissue and medical records for research through this project. You can learn more by contacting me (the patient advocate for the CU Lung SPORE) at jfreeman.wa@gmail.com, or the CU Lung SPORE at the address above.

Do it to honor your loved one.  Do it for the next family stricken by lung cancer. Whatever your reason, please do it.  We’ve lost too many to this disease.

 

Note: This research study’s official project title is “Patient-Initiated Biobanking of Deceased Lung Cancer Patient Tissues” and its study number is COMIRB# 15-1294.  It is not a clinical trial dealing with live patients, so you will not find it listed on clinicaltrials.gov.  

Life Between Scans: Call for Submissions

book-image-with-text

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