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Wednesday, August 28, 2019

Adenoid Cystic Carcinoma in the news

It has been a while since I did a news post. Today I will add a few links to news items (anyone following this topic probably already knows most of the news items), along with a couple of links to search Twitter, since it is a good source of up-to-date news on this rare cancer.

Brave Like Gabe Running and Bike Trail has been named in Perham, MN. Named in memory of great athlete Gabe Grunewald, who died of Adenoid Cystic Carcinoma earlier this summer. I miss Gabe's strength and model example of how to continue living with this rare cancer, and wish her family and friends peace.

Drug development news: HLB's subsidiary LSK Biopharma has been awarded permssion for Phase 2 of rivoceranib. The trial isn't yet listed on the site when searching for Adenoid Cystic Carcinoma trials - stay tuned.

Wired article on carbon ion therapy experienced by an Adenoid Cystic Carcinoma patient, which promises to be even more effective than proton radiation therapy. There are two trials listed as recruiting on the site.

Search for latest #adenoidcysticcarcinoma on Twitter.

Sunday, July 28, 2019

Checking in, marking 13 years wearing Adenoid Cystic Carcinoma

Not much happening with the Adenoid Cystic Carcinoma side of my life these days - all recent scans have been unremarkable, and I am still NED (No Evident Disease). I am taking the view that 13 is a lucky number, and recognize that it is a pretty amazing thing that I am without evident cancer this many years after my initial diagnosis and treatment. I still keep up with ACC news, and share what I find on Twitter (you can search on Twitter for other news items on the topic using this link, or this link.) For times when I have questions regarding treatment plans or research on the long-term progression of this disease, I use my local library for information. Since I work at a medical center, I have had occasion to share what I have learned and experienced with students and faculty, which I hope brings some value to all of what I have gone (and continue to go) through.

Who links to my website?