Ah, the life of a research advocate …

Life as a lung cancer research advocate can require a lot of travel. This week I’m in Washington DC for two meetings.

Monday I participated as the sole patient advocate in the National Cancer Institute’s Small Cell Lung Cancer (SCLC) working group meeting, along with some of the top US researchers in this disease. The meeting will provide fodder for the NCI’s report to Congress about the Recalcitrant Cancers Act.

Thursday I’ll be one of several patient advocates at the National Institutes of Medicine for a meeting on data sharing, along with medical institutions, pharma, and healthcare payers. Data sharing in the electronic age involves more than just who can see your medical records. We patients and family members have already participated in several phone calls in preparation for this meeting. It will be interesting to hear what the other stakeholder groups think are the main barriers to data sharing, and what we should do about them.

In between, I’m trying to get caught up on expense reports and writing projects while adjusting to a new time zone. I hope my inputs make a enough difference for patients to make the travel worthwhile.

Thinking about a “drug vacation” from crizotinib? Read this first!

Original post is on The ROS1ders website

I’m Janet Freeman-Daily, a cofounder of The ROS1ders.  I’m writing this post in response to some of the comments we’ve seen recently in our private Facebook group “ROS1 Positive (ROS1+) Cancer.”

Many of our members who have ROS1+ cancers take the targeted therapy crizotinib (Xalkori), a tyrosine kinase inhibitor (TKI).  It was approved by the US FDA for ALK+ non-small cell lung cancer (NSCLC) in 2011, and for ROS1+ NSCLC in 2016.

Many ALK+ and ROS1+ NSCLC patients have had long-term stability or no evidence of disease (NED) on crizotinib, and are tolerating it well. Some of these patients suggested they might “take a vacation” from crizotinib for a while, as some people do with chemo. They think this could help them avoid developing resistance to crizotinib (which could allow them to stay on the drug longer), and that they can start taking the drug again later if the cancer returns. Their oncologist might even agree with this idea.  But …

PLEASE — If crizotinib (Xalkori) is working for you and you can tolerate it, consult a ROS1 expert before stopping treatment!  

If your doctor tells you should stop taking crizotinib for a medical reason (like a severe side effect or toxicity), or temporarily during surgery or radiation, you should follow their advice. But don’t stop taking crizotinib just because you want a drug vacation.

ROS1+ cancer is a rare disease. Oncologists who have seen no or few ROS1 patients usually haven’t followed the fast-moving research into this disease.

Dr. Ross Camidge and Dr Robert Doebeleare among a handful of doctors who have treated dozens of ROS1+ and ALK+ patients with crizotinib. Globally, they are considered experts in ROS1+ NSCLC.  Both have told me they think it’s a bad idea for patients to stop taking Xalkori just because they’re NED or stable on the drug. Below are the reasons they gave me.

  • Targeted therapies are not the same as chemo. TKIs inhibit the cancer, but do not kill it. For metastatic cancer patients, cancer cells likely remain in the blood, lymphatic system, or body (we just don’t have the means to detect them–that’s why we say “no evidence of disease” instead of “cancer free”).  If you stop treatment, you stop inhibiting those cancer cells, and any cancer that remains can resume growing—sometimes very fast. Those cells can continue to mutate. There is no guarantee that crizotinib will be effective against your cancer when you restart it after a “drug vacation.”
  • TKI flare is well documented for EGFR and ALK patients on TKIs like Xalkori.  What is TKI flare? Some patients (not all) on TKIs who stop taking the drug can see their cancer grow quickly after just a week or two. When they restart the drug, it doesn’t always work again.
  • We don’t have much evidence of what may happen if NED patients stop taking their TKI, except for one study.  In the study,  EGFR+ NSCLC patients who had no evidence of disease on Tarceva (a TKI like Xalkori) stopped taking their cancer drug. All saw their cancer return within a year.
  • While chronic myeloid leukemia (CML) patients on a TKI (Gleevec) have been able to stop taking their TKI, their blood cancer is not as aggressive and deadly as lung cancer.

Each patient has the right to make up their own mind about their treatment,  In my case, I have had no evidence of disease on crizotinib for 6 years. When I asked about stopping crizotinib, Dr. Camidge has told me that he does not want me to stop taking my cancer drug. I’m going with his expert opinion.

Join me for @TheALCF Lung Cancer Living Room 1/15 5:30 PM Pacific

Please join lung cancer patients/survivors Teri Kennedy, Jeff Julian, Don Stranathan, Andy Trahan, and me, along with Dr. Amy Moore (Director of Science and Research, Bonnie J. Addario Lung Cancer Foundation, also know as ALCF) Tuesday January 15, 2019 5:30-7:30 pm Pacific Time for a discussion on “Navigating the Latest Advances in Lung Cancer Treatment.” I’ll have an opportunity to talk about The ROS1ders and the research project we created  in partnership with ALCF.

Join us in person in San Carlos, California, watch live on Facebook, or watch later on YouTube or in the Living Room Library.

 

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.

#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.”