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
- 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?
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:
The application period is open from March 8 to May 1, 2019. Hope you’ll apply!
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
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.
Original post is on The ROS1ders website
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.
However, not all cancers can be detected using a PET scan and radioactive glucose. This means not all cancers suck up sugar faster than normal cells. Reducing the available supply of sugar would probably not affect such cancer cells.