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.

 

About keto diets and cancer

Debates arise frequently in the lung cancer community about reducing sugar intake to prevent and/or treat cancer. Some people claim a ketogenic diet is an effective cancer treatment, but rarely provide objective, scientific evidence to support this claim.

A recent article explored claims about the value of ketogenic diets for cancer patients. It was published in an open access journal and written by researchers at the University of Manchester in the UK. The article found high-quality evidence regarding ketogenic diets for cancer patients is lacking:

“High‐quality evidence on the effect of ketogenic diets on anthropometry, metabolism, QoL [quality of life] and tumour effects is currently lacking in oncology patients. Heterogeneity between studies and low adherence to diet affects the current evidence. There is an obvious gap in the evidence, highlighting the need for controlled trials to fully evaluate the intervention.”

You can read the full article here:

A systematic review of the use of ketogenic diets in adult patients with cancer

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