John decided he wanted to be aggressive in pursuit of solutions to his GBM. It is such a daunting diagnosis solely depending on the standard of care did not seem prudent. The challenge was identifying and qualifying for a suitable trial. Trials by their very definition are experimental. You hope for a beneficial result but there are no guarantees. However, he didn't want to just stand by and miss a chance for some improvement. The team at Pinnacle helped us cut through the swath of trials that are in flight throughout the country. After some review John decided to target one for which Duke was a lead site. This trial employs Avastin, in combination with the standard of care, for patients who are newly diagnosed with GBM. The trial details are at : http://www.clinicaltrials.gov/ct2/show/NCT01740258?term=GBM&recr=Recruiting&state1=NA%3AUS%3ANC&rank=24 for those interested in the nitty-gritty details.
We descended on Durham Sunday, Feb 10th arriving at the hotel well after midnight. Though I had visited Raleigh many times for work at previous companies I had never made a trip out to Durham. On the drive to the hotel in Durham, I received a hard time from Melanie and John for not just "knowing" where to go after so many previous NC trips! I had forgotten how little highway lighting there is in NC. It makes exits off the highway feel like a quick turn onto a trail into the woods!
Monday morning we were up bright and early for an 8:30 breakfast meeting with the Pinnacle Health Care SE region representative, Gina. She shared how the day would likely go with the Duke team. It was the cavalcade of presentations, tests, discussions, training, and review that she forecasted. In particular, the discussion with Dr. Henry Friedman, who is taking John on directly as his patient, while short, was very positive. It was clear that the attitude of striving to beat this cancer, which permeates the discussion with all of the team, starts at the very top with Dr. Friedman.
Over the course of Monday and Tuesday, John qualified for this newly opened trial. I cannot express what a relief this was to all of us.
Because the schedule for the visit was rather open ended (picture a team of busy doctors, nurses, and researchers trying for a time slice to meet with John, wrapped around their pre-existing schedule) we committed to two days on the ground at Duke. As it turned out we ended up having most of Tuesday to ourselves as we crammed everything we could into the shortest period of time.
Monday evening we met a great friend of mine from the MMC Networks days, as Leonard Bush and his wife Amy joined us for dinner. Leonard, many, many years ago, took me to a AAA ballgame featuring the hometown Durham Bulls, a team made famous in the film Bull Durham. Monday night we enjoyed some fine Carolina BBQ at Tobacco Road Sports Pub, situated atop the left field wall at the home of the Bulls.
Having the late flight Tuesday we ended up with a bit of free time before departure and, knowing we were looking at an evening of airline/airport food, we leveraged another eatery tip from Leonard. Yes, we had more BBQ, this time at The Pit. We can definitely recommend both restaurants.
We had a largely uneventful flight home with the exception of an hour delay in Vegas leading to another post-midnight arrival. The next day brought the start of his chemo and radiation therapy treatments.
PS : An interesting statistic we picked up during the course of the trial
review was that while there is almost always a trial or even several
trials ongoing at any time for just about any cancer you name, only
somewhere between 3 to 5 percent of cancer patients avail themselves.
There are many considerations in participating in a trial, including
some John will experience through this trial, but that percentage seems
so low, it is hard to understand.
It sounds like a very productive and positive few days. Very glad to hear it! I would imagine that many people believe doing a trial is cost prohibitive, in terms of travel or any expenses involved. Also, there may be those who just accept "Fate" and give up. . .I wonder if everyone knows or understands how many options are available to them?
ReplyDeleteThe Durham Bulls are in the same league as the Toledo Mudhens, so I have the opportunity to see them quite a bit. Still waiting for the second coming of Crash. . .