Showing posts from February, 2016

A Tale of a Trial

If there are demerit points for bloggers, I’ve surely earned quite a few by going through a clinical trial from entrance to exit without blogging about the experience at all. I will do my best to make up for this omission of potentially useful information with a synopsis of my experience.
If you have decided that a clinical trial might be your best next option, the first step is finding a clinical trial for which you match the profile of a qualified participant and that is at a logistically possible location. When my search for a clinical trial began in earnest in March 2015, I knew that there were two possible drugs that might be my best second line of treatment. One drug, AZD9291, had closed its trials and was moving towards FDA approval. The second drug, CO-1686, also called rociletinib, had an open trial at Roswell Park Cancer Institute in Buffalo, NY. I met the initial qualifications and I have family in Rochester, just an hour and a half from Roswell. So, game on!
How does a cl…

World Cancer Day: Honoring My Online Patient Community

Today is World Cancer Day, and my thoughts turn to my relationships with other lung cancer survivors. How does one meet other people dealing with the same disease you have? It’s not easy. Doctors and nurses are bound by confidentiality regulations, so they can’t introduce us to each other. I live in thinly populated northern New York, so there aren’t many people in my situation near me. There aren’t support groups near me, indeed there don’t seem to be many support groups for lung cancer anywhere. The joke is that organizers can’t keep the groups together because the participants keep dying.
When I needed to find others who really, really understand, I turned to the Internet. Lung cancer patients have built friendly, lively, and supportive communities online. We friend each other on Facebook, we follow each other on Twitter, we find out about each other’s blogs and read them. We have organized Twitter chats where we trade information and thoughts with patients, medical professionals,…

Please support the EGFR Resisters Research Fund!

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!