Lung cancer survival is looking UP — WAY up

This chart from the NCI’s SEER database shows the five-year survival for lung cancer. Note the awesome upward trend.  Survival increased to 19.4% in 2015.

This doesn’t seem like a bit improvement until you think about what it reflects. The year 2015 was only four years after the FDA approved the first targeted therapy for ALK-positive non-small cell lung cancer (the first of MANY targeted  therapy approvals), and the first year the FDA approved any immunotherapy for lung cancer (as of today, four immunotherapies have been approved for lung cancer).  That means the 19.4% survival in 2015 doesn’t yet reflect ANY of the improved survivals from targeted therapy or immunotherapy (except some patients on Tarceva who happened to have EGFR-positive lung cancer).

Edit to add:  Lung cancer screening for high-risk groups began AFTER 2015, which means we’ll be catching more lung cancers in early stages, when they are curable.

Imagine where this curve will go by 2020! Go cancer research!

You can find the data for this chart here.

8 years in the Cancerverse

ROS1der cofounders Lisa Goldman, Janet Freeman-Daily and Tori Tomalia at the C2 Awards Ceremony in New York City May 2, 2019.

Eight years ago today, I first heard the words, “You have lung cancer.”

In 2011, I was diagnosed with stage IIIa non-small cell lung cancer (NSCLC). I had traditional chemo and radiation. Once treatment ended, my cancer immediately spread to a new site. Then I learned about online patient communities, and biomarker testing for genomic alterations, and clinical trials. I had more chemo and radiation. My cancer spread again. Then I tested positive for ROS1+ NSCLC, and entered a clinical trial. Now my  cancer has been undetectable by scans for over 6.5 years thanks to research.

Eight years ago today, I first heard the words, “You have lung cancer.”

In 2011, the majority of lung cancer patients were diagnosed after the cancer had already spread, and half the patients died within a year of diagnosis. Now we have lung cancer screening for those at high-risk of lung cancer, to catch the disease in early stages when it is curable. We have new therapies that are allowing some patients to live well for 4 years or more. In 2011, the standard of care guidelines published by the National Comprehensive Cancer Network for non-small cell lung cancer were updated about once every 5 years.  Now the guidelines are updated about 5 times a year to keep pace with the record number of new treatment approvals that are proving effective for an every-increasing number of patients.

Eight years ago today, I first heard the words, “You have lung cancer.”

In 2011, I had no idea what cancer advocates did. I’d never met any. As I began to feel better, I wondered why I was still alive when so many others had died. Gradually I began supporting others in online forums, telling my lung cancer story, learning about treatment options and research, and sharing my patient perspective with the lung cancer community, medical professionals, and policy makers in hopes of increasing funding, acclerating research, and improving outcomes for other lung cancer patients. Now there are dozens of other lung cancer patients and caregivers advocating as well.

Eight years ago today, I first heard the words, “You have lung cancer.”

From that singular moment of disbelief and panic, I started on a journey that has changed my priorities, and my approach to life in general.  I now focus on living life to the best of my ability (whatever my abilities might be at the moment), on what matters most to those I love, on what will make a difference for other lung cancer patients–especially those who have my rare type of cancer.

I wonder what the next 8 years will bring.

 

Take Action Today! Support restoring $20 million in lung cancer research funding

If you do nothing else today, DO THIS & PASS IT ON. Please ask your US Congressional Representative to support restoring $20M in funding for the Lung Cancer Research Program in 2020 before the March 26 sign-on deadline. It only takes a minute

https://www.votervoice.net/mobile/LCA/Campaigns/64484/Respond

Want to be a #lungcancer patient research advocate? Inaugural @IASLC STARS program application period is open!

    • Have you or a family member been diagnosed with lung cancer?
      Are you already active in providing lung cancer support and/or education to others?
      Do you want to ramp up your advocacy work and learn more about the science of lung cancer research?

    THEN …

    Apply for the brand-new STARS (Supportive Training for Advocate in Research and Science) program!  STARS was developed by the IASLC (International Association for the Study of Lung Cancer) in collaboration with international lung cancer patient research advocates and advocacy nonprofits.

    Those accepted in the program will be assigned a mentor from their own country, meet and learn lung cancer science from researchers, develop science communication skills, and attend the World Conference on Lung Cancer (WCLC) in Barcelona, Spain in September 2019.

    To learn more and to find the online application, click here:
    https://www.iaslc.org/supportive-training-advocates-research-and-science-stars

    The application period is open from March 8 to May 1, 2019. Hope you’ll apply!

    Median survival for metastatic ALK+ lung cancer can be more than SIX YEARS!

    Finally! A published study offers proof that metastatic ALK+ lung cancer patients can live for YEARS thanks to targeted therapies.

    This is phenomenal, considering that in 2011 (the year crizotinib was approved in the US for ALK+ non-small cell lung cancer, or ALK+ NSCLC) , the US SEER database listed average survival for metastatic non-small cell lung cancer at less than one year.

    In this study of 110 patients at University of Colorado (one of the sites in the original clinical trial of crizotinib for ALK+ NSCLC), the median overall survival time from diagnosis of stage IV disease was 81 months. That’s 6.8 years.

    Over six YEARS of survival.  Woohoo!  Note that this median survival (when 50% of the group remains alive) will be even longer for patients diagnosed after 2011, when crizotinib was approved.

    Besides finding patients with stage IV ALK-positive NSCLC can have prolonged overall survival, the study also found:

    • Brain metastases at diagnosis of stage IV disease does not influence overall survival. (Wow. Brain mets aren’t an automatic death sentence.)
    • Having more organs involved with tumor at stage IV presentation is associated with worse outcomes. (Bummer, but we can work on that.)
    • Prolonged benefit from pemetrexed chemo is associated with better outcomes (some patients in the study had chemo before or after a targeted therapy). 

    Yay for cancer research that is helping more lung cancer patients live longer!  You can read the complete article here.

    Natural History and Factors Associated with Overall Survival in Stage IV ALK-Rearranged Non–Small Cell Lung Cancer
    Jose M. Pacheco, MD et al, University of Colorado Cancer Center

    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.