Profile avatar
jfreemandaily.bsky.social
Lung cancer patient and research advocate. Cofounder #LCSM Chat, The ROS1ders, IASLC STARS. Also writer, retired engineer, science geek. Temporarily between feline overseers. Blog at grayconnections.net.
56 posts 1,648 followers 1,912 following
Prolific Poster
Active Commenter

Updated @ascocancer.bsky.social living guidelines for NSCLC are out! Participating on the Expert Panel not only gives me hope to see so many new treatments, it also reminds me how challenging it must be for clinicians to keep up. ascopubs.org/doi/10.1200/... ascopubs.org/doi/10.1200/...

I was working as an engineer at Boeing when the company offered early retirement benefits in 1995 to workers 55 and older. It was offered in part to avoid layoffs. www.nytimes.com/1995/03/25/b... 1/4

Rewriting journal articles to eliminate the forbidden words research, woman, female, systemic, bias, diversity: Our [research] analysis considered a group of people treated with a [systemic] cancer drug which travels throughout the body. 1/3

A thoughtful perspective on the importance of government-supported research infrastructure. It's not perfect, and could use reform. But you can't reform something that's disappeared due to lack of funding for labs, support staff, equipment and office space. www.nytimes.com/2025/02/14/o...

🚨 Applications Open! The 2025 #IASLC STARS PRA & Scholar Program empowers lung cancer advocates to drive patient-centered research & scientific progress. 📅 Apply by March 14, 2025 🔗 Learn more & apply: www.iaslc-stars.org Make a difference! #LungCancerAdvocacy #IASLCSTARS

Amp up your lung cancer patient advocacy! Apply for the STARS Program Take steps to amp up your lung cancer patient advocacy! Applications are now open for the 2025 IASLC STARS PRA & Scholar Programs. STARS (Supportive Training for Advocates on Research and Science) can help you develop and…

DEI is not the same as diversity in clinical trials. Diversity in clinical trials aims to test new drugs in a wide variety of people, because response to some medicines can vary by gender, age, ethnicity, and genetics. www.statnews.com/2025/01/23/f...

Science alert: new administration is imposing wide range of restrictions on NIH, "including the abrupt cancellation of meetings such as grant review panels. Officials have also ordered a communications pause, a freeze on hiring, and an indefinite ban on travel." www.science.org/content/arti...

Biomarker testing can help identify actionable mutations in patients with SqNSCLC, especially in those without a history of smoking. Testing is not performed consistently in this setting. #LCSM #lungcancer www.sciencedirect.com/science/arti...

I feel seen.

Thanks for the laugh, @joehaldeman.bsky.social . "Kyloren syndrome" for the win!

. @jfreemandaily.bsky.social The example in this article of how AI in healthcare could help empower cancer patients made me think of you. www.liebertpub.com/doi/full/10.... "...predicts that institutional health care will focus on adopting AI for incremental operational improvements..."

Geeking out with fellow NTRAP research advocate @whyiresist-1.bsky.social at IMAT meeting--learning about and providing patient perspectives on technologies for molecular analysis (proteomics, microfluidics, microdissection, digital pathology, etc). Fascinating! www.cancer.gov/about-nci/or...

My suggestion after Duncan’s good advice is once you tell your story, and you’re over the shock of diagnosis, don’t leave it there. Call out stigma (no one deserves this disease) & lack of research funding. Champion lung cancer screening for whom it’s appropriate. Try for media coverage, too. #lcsm

⭐️Leptomeningeal metastatic disease: new frontiers and future directions @natureportfolio.bsky.social Nature Reviews Clinical Oncology www.nature.com/articles/s41...

Please be patient. I left 10.5k followers behind on Xitter. Sure, some were bots, but still. It’ll take some time to pick up appropriate follows/followers on this app. Quality, not quantity. Please help me build another lung cancer patient/caregiver community here. Our hashtag is #lcsm.

ISJETs: Learn the terminology and lead in your own disease type. Im very excited to say our first paper on INvestigator-assigned subjective or judgementl efficacy and toxicity reporting is now in press at JTO.

ISJET reporting is arbitrary. For example, there is no universal definition of what constitutes a “tolerable”, “acceptable”, or “favorable” toxicity. Demonstrating this, we found these terms used in studies with grade 3+ AE rates ranging from 0 to 93%.

Only 12% of trials separately reported grade 1 from 2 AEs. The difference between grade 1 and 2 AEs can be highly significant to patients. Often, grade 1 AEs refer to asymptomatic or mild clinical manifestations, whereas grade 2 AEs carry a functional consequence.

Regarding efficacy reporting, ISJET terms were used in 41% of studies. Trials evaluating treatments with a higher ORR were more likely to use ISJETs, although there was broad range of ORR rates (5-100%) for which ISJETs phrases were used.

'No new safety signals' when trials are published with longer follow up is a particular sleight of hand. While this sounds like toxicities are not evolving, it is really saying no new 'categories' have appeared. Increase in frequency or severity of the same toxicities over time woud not count.

pubmed.ncbi.nlm.nih.gov/39643116/ official isjet reference

All told this new paper is the perfect companion to our 2020 call out on variation in toxicity reporting practices at conferences and the need for standardized minimal disclosure approaches pubmed.ncbi.nlm.nih.gov/32353598/

Why #lungcancer (the #1 cancer killer) needs more funding and research: Only 2 of the 7 LC patient advocates in this 2018 photo are still alive (including me). While newer treatments like targeted therapy and immune checkpoint inhibitors are effective for some, they don't work for all. #LCSM

Apparently there's a new ROS1/NTRK TKI in development. #LCSM #lungcancer #ROS1 www.businesswire.com/news/home/20...

Susan Wojcicki, former CEO of Youtube and one of the principals of Troper Wojcicki Philanthropies, wrote a blog post prior to her passing about her experience with #lungcancer. If you have lungs, you can get lung cancer. #LCSM #LCAM #LungCancerAwarenessMonth blog.youtube/inside-youtu...

Facebook will be changing their terms as of January 1, 2025. I followed the link to the new terms, read through it, and discovered it was last updated in 2022. Where are the NEW terms? In a locked filing cabinet in a disused lavatory with a sign on the door saying "Beware of the leopard"?

www.nytimes.com/2024/11/23/h... Doctor’s Office Medical care can be wearying and time-consuming, especially for seniors. Researchers are beginning to quantify the burdens.

"The Value of Offering #Oncofertility Counseling in Young Patients With Newly Diagnosed Cancer Is Unquestionable" 🫳🎤The name says it all. 🙏 Authors and #JCOOP journal #ASCO #AYACsm #AYAc #oncSky #canSky ascopubs.org/doi/10.1200/...