September 25, 2012
I am a 59 year old man who was diagnosed with prostate cancer in 1999. Although I had surgery, followed by radiation therapy, followed by androgen-blocking therapy, the disease continued to progress and has metastasized to one area of my spine. The disease progression has been significantly retarded, I believe, by my participation in several clinical trials over the past several years, at Johns Hopkins and elsewhere. "The 'New' Prostate Cancer Infolink" is the best source of information I have found in my considerable research about cutting-edge prostate cancer issues, and especially about new drugs and clinical trials. It is of great importance to patients like me to have such a resource available. For example, the daily posts or blog that I receive from the sitemaster by email have helped me--and my physician--decide upon the appropriate sequencing of the several clinical trials for which I have been eligible. The issue of optimal sequencing is highly uncertain but is important, because choosing to participate in certain clinical trials early on can disqualify a patient from participating from other, potentially beneficial trials later on. I particularly like the site's daily blog because it is written in language that a layperson (like me, an antitrust lawyer) can readily understand, but the information is not simplistic or "dumbed down," and the blog provide links to articles and resources that are useful even to my oncologist. (My oncologist runs clinical trials himself, but he can't get to every conference that the Infolink sitemaster reports on.) In other words, the presentation of the information achieves an excellent balance of technical detail and accessibility. I am grateful for the efforts of those involved and for the clear, direct prose style of the blog.
How would you describe the help you got from this organization?
How likely are you to recommend this organization to a friend?
How do you feel you were treated by this organization?
When was your last experience with this nonprofit?
How did you find this group?
Through a fellow participant in a clinical trial.
MY ROLE:Client Served