Thursday, September 3, 2015

Clinical Trial Resources

Today marks exactly two years since the very bad day I heard the gastroenterologist frantically utter the horrible words, "It is most-likely cancer."

My husband, who accompanied me to the appointment, relayed later that the statement was the doctor's second attempt to break through my anesthesia-induced mental fuzziness. That may explain why I perceived his delivery as "frantic." I have no memory of what the doctor's initial words to me had been, or my response. Patrick reports that my first comment was, "That's not good news."

Master of Understatement, that's me!

The first year after diagnosis was spent mostly trying to not let chemotherapy kill me. I had an excellent medical oncologist, who was both thorough and compassionate, but I hated everything about chemotherapy.

The second year after diagnosis was spent discovering that chemotherapy hadn't cured me, and probably couldn't cure me. After that, I relentlessly pursued acceptance into a particular immunotherapy trial at NIH. Thankfully, I completed the treatment, and my first follow-up showed great promise. [First follow-up post here.]

As grueling as the trial sometimes was, it was fulfilling in a way that I can't completely describe. I felt that I was part of something bigger than myself; that my participation had merit, even though it was largely self-serving.

I'll be heading back to NIH soon for my second follow-up, hoping for success, and thanking God in advance, per Bl. Solanus Casey.

I feel lucky to have been given the chance to participate in the TIL trial, and I hope that my experience will help others who are facing a terminal diagnosis to consider participating in a clinical trial sooner rather than later. A patient's  health and youth will be two of their most important assets when enduring the rigors of a clinical trial. Many people think of clinical trials as the last possible resort, but it doesn't have to be that way.

Some resources, if you'd like to start investigating clinical trials:
COLONTOWN is a "virtual neighborhood" of pages related to colorectal cancer. Resources for care givers are included as well. I spend a lot of time there, answering questions and talking about clinical trials. NBC Nightly News did a feature story recently that may be found here. To register to join this online support community, go to You can find me in The CLINIC, which is where the newest trials are discussed.

FAQ about the TIL trial at NIH: Surgery Branch FAQ

Trial database for all cancers:

Colorectal cancer (CRC) clinical trials here:  Trial Finder

My friend Tom Marsilje's blog: Adventures In Living Terminally Optimistic

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