New Year, Old Dusty Blog

It’s been almost a year and a half since I posted anything here except links to paid work published elsewhere. This blog has remained in my thoughts throughout the whole period of silence. 

Silent here, not elsewhere. The past year has been full of speaking engagements, patient advisory panels for pharmaceutical companies, other words in other places. What I’ve written and said has been sincere and well-researched, but has not included some things I think about. When you are writing and speaking for pay, you aren’t really free to share everything that might be on your mind. The customers for paid pieces want them to be hopeful and encouraging, to suit their purposes.

My time and energy has also been invested in establishing a new patient advocacy group, the EGFR Resisters. Co-founders are Ivy Elkins, Jill Feldman, Teri Kennedy, Allen Lee, Ildiko Medve, and Colleen Sturdivant. Besides a website, we also have a closed Facebook group with over 900 members who share  treatment experiences, research news, clinical trial announcements, and more. We have worked with the Bonnie Addario Lung Cancer Foundation to sponsor a scientific study that will create models that researchers can use to test new treatments and treatment combinations. We have been busy since our Facebook group and Twitter went live on August 1, 2017. This is some of the best work I’ve ever done, and the best team I have ever worked with.

Meanwhile, my medical adventure has been challenging. Since August 2017. I’ve been on four lines of treatment including a short-lived clinical trial, changed the specialist I go to for scans, suffered kidney damage, and watched my options dwindle... it all basically sucks, although I’m still here and still look pretty good. I’m not convinced right now that my current treatment, a modified dose of Abraxane every two weeks, is doing the job. Scans next week will tell the tale.

I’ve become very aware of time, and that my time may be running out. I’ve got some things to say that no one is going to pay me to write, and I had best be sharing them now, while I am able.

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To help improve outcomes for people like me with EGFR mutated lung cancer, please donate to the EGFR Resisters' Research Fund. All donations are tax deductible and are in a restricted fund with the Bonnie Addario Lung Cancer Foundation, a four-star rated charity. Thank you from the bottom of my heart!


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