My #WCLC2018 Presentations

I’ll be attending the annual World Conference on Lung Cancer (#WCLC2018) in Toronto Canada later this month.  For those who are interested, I will be making two presentations.  Hope I’ll see you in the audience!

OA10 – Right Patient, Right Target & Right Drug – Novel Treatments and Research Partnerships
Tuesday 9/25 10:00 AM to 12:00 PM
Oral Abstract Session in the Targeted Therapy Track
Moderated by Howard (Jack) West, Jyoti Patel

ES05 – Collaboration Between Stakeholders to Improve Lung Cancer Research 
Tuesday 9/25 15:15 PM to 16:45 PM
Education Session in Advocacy Track
Moderated by Bonnie Addario, Toshiyuki Sawa

Call to Action — Lung Cancer Patients & Doctors in Oregon

 

pills in dollar sign

Are you from Oregon? You may be losing a very important tool to help you survive cancer. Please stand up to keep providing Medicaid coverage of FDA approved comprehensive genomic sequencing. Many lives depend on it!

OREGON CALL TO ACTION!
The state of Oregon Health Authority Health Evidence Review Commission (HERC) recently released proposed guidance to not provide coverage for the use of FDA-Approved Next Generation Sequencing (NGS) tests for cancer patients in the state with Medicaid.

LUNGevity Foundation and Caring Ambassadors are seeking volunteers–both lung cancer survivors and health care professionals–who live in the state of Oregon, to provide testimony at a public meeting on this issue scheduled for 1:00pm-4:00pm on  September 27, 2018 in Wilsonville, Oregon. Ideal testimony would be provided by survivors who have received NGS, or other comprehensive biomarker testing, to guide their treatment and by health care professionals who order, consult, or care for patients who have received NGS, or other comprehensive biomarker testing.For more information or to volunteer, please contact:

  • Anna Pugh, LUNGevity Foundation Director of Public Policy Initiatives, at agpugh@lungevity.org or 240-454-3105 or
  • Cindy Langhorne, Caring Ambassadors Lung Cancer Program Director at cindy@caringambassadors.org or 503-632-9032 ext. 1.

A copy of the comments submitted by LUNGevity Foundation to the HERC can be found here.

Thanks to Matt Ellefson at SURVIVEiT! for helping to make this need known.

A call for more research on “chemobrain”

Image credit: Microsoft

The journal Trends in Neurosciences published an article June 12, 2018 calling for more research into cognitive impairment caused by cancer treatment.    Unfortunately, it’s behind a paywall.  To get an overview of the content,  read Cancer Today’s July 18, 2018 article “What is ‘Chemobrain’?” , which is an interview the article’s lead author, Todd Horowitz of the National Cancer Institute.

 

When am I old enough to die?

This Photo by Unknown Author is licensed under CC BY-SA

Barbara Ehrenreich’s new book has a title that makes a much-needed point: Natural Causes: An Epidemic of Wellness, the Certainty of Dying, and Killing Ourselves to Live Longer.   

As a metastatic cancer patient, this resonates with me.  The fact is, people die. Nothing can change that–not doctors, not preventative check-ups, not healthy living. NOTHING. Our bodies have built-in components that can cause disease (cancer being one) and tissue breakdown.  All living things will eventually wear out and reach a natural end, like the potato in image above.

The Western World is so obsessed with not dying that we sometimes forget to live. Knowing how best to keep our bodies healthy is important, but at some advanced age we should stop worrying about lifestyle elements that aren’t perfectly healthful, stop intrusive testing for things that **might** kill us, and just focus on living as well as we can given our circumstances.

Ms Ehrenreich excerpted parts of the book in her article in The Guardian 31-Mar-2018. In it, she addresses society’s compulsive need to blame someone for dying. Did they eat the wrong things? Drink too much? Exercise too little? Smoke? Stress over work?  Essentially, it’s the same issue we wrangle with lung cancer stigma, but applied to all health conditions.  Why does dying have to be someone’s fault? Reality is, we’re all going to die of something.

Another article in the Guardian interviewed Ms Ehrenreich about her perspective.  It starts with, “Four years ago, Barbara Ehrenreich, 76, reached the realisation that she was old enough to die. Not that the author, journalist and political activist was sick; she just didn’t want to spoil the time she had left undergoing myriad preventive medical tests or restricting her diet in pursuit of a longer life. While she would seek help for an urgent health issue, she wouldn’t look for problems.”

Those sentiments reflect my own thinking nowadays.  I recently had several preventative health appointments: annual physical, Hep C screening, 3D mammogram, gynecological exam, and colonoscopy. Some of the procedures  seem reasonable: for instance, a new vaccine can prevent more types of pneumonia (I know from experience that pneumonia reduces my quality of life), and having a polyp snipped is an effective and painless way to prevent colon cancer. However, I wonder if I should be spending money (mine as well as the insurance company’s) to undergo screening for cancers other than the one I’ve already got, given that I’m not sure I would undergo aggressive treatment for whatever they might find.  Chances are, my metastatic lung cancer will eventually recur, and sooner rather than later.  If the colonoscopy had detected advanced colon cancer, and my only option to treat it was radical surgery to remove a section of my colon, I’m not sure I’d do it given my lung cancer is not cured. If I have limited life remaining, why would I spend it recovering from a significant surgery that can’t cure me?

Each person will have their own answer to the question, “Am I old enough to die?” because each has their own set of priorities. I know some terminal cancer patients who would subject themselves to any level of discomfort in order to have more time with their small children. Others would find life is not worth living if they were unable to walk in the woods every day. Whether or not to undergo a cancer treatment should an individual’s decision based on personal priorities, overall health, effectiveness and quality of life impact of available treatments, and cost.  But at some point, regardless of our priorities or treatment decisions, death wins.  Many of us waste a lot of time, energy, and resources denying that fact.

For my two cents, Barbara Ehrenreich gets it right. I hope people listen to her and consider changing their perspective on life and death. It could make a big difference in their quality of life, and perhaps in the overall burden of healthcare costs as well.

I’m going to eat some chocolate now.

REFERENCES

Why are the poor blamed and shamed for their deaths?  (Barbara Ehrenreich, The Guardian, 31-Mar-2018)
https://www.theguardian.com/lifeandstyle/2018/mar/31/why-poor-blamed-shamed-their-deaths-barbara-ehrenreich

When do you know you’re old enough to die? Barbara Ehrenreich has some answers  (Lucy Rock, The Guardian, 7-Apr-2018)
https://www.theguardian.com/lifeandstyle/2018/apr/07/barbara-ehrenreich-natural-causes-book-old-enough-to-die?

Natural Causes: An Epidemic of Wellness, the Certainty of Dying, and Killing Ourselves to Live Longer  by Barbara Ehrenreich, available 10-Apr-2018 on Amazon.

 

Medicare approves genomic testing for cancers

Today the Centers for Medicare and Medicaid announced they will cover Next Generation Sequencing (NGS) for cancer! This is a major victory for all cancer patients.

Decision Memo for Next Generation Sequencing (NGS) for Medicare Beneficiaries with Advanced Cancer (CAG-00450N)

#LCSM Chat Topic 3/8/2018: Cancer Advocacy 101–Patients & Conferences

Chemist Jean Cui at #ASCO17 posters with #ALK & #ROS1 NSCLC patients who thrive on drugs she helped develop

As cancer patients and caregivers transform into active cancer advocates, they may think about attending medical conferences.  On March 8, at 8 pm Eastern Time (5 pm PST), #LCSM Chat will discuss various aspects of cancer advocate participation in medical conferences.

Some reasons for cancer advocates to attend medical conferences are to:

  • Learn more about cancer and treatment options for cancer
  • Get details about new research
  • Meet the top doctors who treat their type of cancer
  • Support an advocacy organization’s outreach booth
  • Network with other advocates, as well as clinicians and researchers
  • Share an advocate’s perspective on a specific topic, sometimes as an invited speaker

As more advocates participate in conferences, the conference organizers, professional societies, and medical practitioners are coming to understand the benefits of including advocate voices in their programs. #LCSM Chat member Janet Freeman-Daily was recently interviewed by the International Association for the Study of Lung Cancer about her participation in conferences–read the resulting article here: Why Should Advocates Attend Academic Lung Cancer Conferences?

Tools exist to help advocates navigate cancer conferences and understand the content they will see:

If you know of other resources, please share them in the comments on this page or in the chat.

Some professional societies and cancer nonprofits sponsor programs that enable cancer advocates to attend conferences and learn more about medical research:

  • AACR’s ScientistSurvivor Program
    Participants receive travel grants and participate in special educational programs at cancer research meetings.
  • ASCO’s Conquer Cancer Foundation Patient Advocate Scholarship Program
    Provides need-based grants to cover travel and registration for a variety of ASCO meetings, including the huge Annual Meeting in Chicago each June. Applications for the Annual Meeting are usually accepted during a window in early March.
  • RAN’s Focus on Research Scholar Program
    Scholars participate in preparatory conference calls, virtual classroom (webinars), learning materials and mentoring for research advocates to improve skills and understanding of biomedical research, and attend the ASCO Annual Meeting.
  • International Association for the Study of Lung Cancer (IASLC) Travel Awards for World Conference on Lung Cancer (WCLC)
    Provides travel grants to WCLC, which is held in a different international city each year—it will be in Toronto Canada September 2018.

Our moderator Janet Freeman-Daily (@JFreemanDaily) will lead our discussion using the following prompts:

  • T1: When a cancer patient/caregiver attends a medical conference, what are benefits to the patient/caregiver? Benefits to medical professionals?  To the conference?
  • T2: If you have attended a medical conference in which patients/caregivers participated, what did you like most about that conference? (Pls state whether you attended as patient, caregiver, or med professional)
  • T3: If a cancer patient or caregiver wanted to attend a medical conference, which would you recommend for their first conference, and why?
  • T4: What tips would you give a cancer patient or caregiver for making the most of their conference experience?
  • T5: What programs help cancer patients and caregivers attend and/or afford conferences? Do you have experience with any of them?

We hope you’ll join our #LCSM Chat on Thursday 3/8 at 8 pm Eastern Time (5 pm Pacific). If you’re new to tweet chats, please read our primer “To Participate in #LCSM Chat.”