@colleenyoung I sure do appreciate your response, compassionate concern as well as I value this community page!

I have Medicaid which is not acceptable at Mayo Clinic; if there was somehow I may qualify for an exception, I will gladly get an expert opinion from them. (I did recently qualify for social security security disability, and I understand that being on it for two years or so makes me eligible for MediCARE...as I am under 50 and relying on state insurance until I may be able to afford other insurance...or when the medicare kicks in).

As wild as it sounds, though I have consulted with many experts, both in the U.S. and internationally, I've yet to receive any treatment since options are mighty slim. My diagnosis came now 25 months ago.

There is a clinical trial I am praying to get into in Santa Monica at Providence St. John's utilizing pemetexred and pembrolizab: both work for other cancers, yet this combo is now in a phase 2 trial, and they're looking promising to shrink the tumor substantially. I will provide an update when I finally get accepted into the trial...I am held up only by red tape from the insurance company not yet willing nor able to provide a requested letter of agreement...though otherwise I am approved to join the study...and get treatment(s)!

...yes, The Chordoma Foundation is invaluable with its indispensable information and extremely helpful staff.

Let's all stay on the sunny side, staying strong and keep keepin' on!!