Yesterday and for much of today, Lee and I spent in the Phoenix-Scottsdale area. As I mentioned in my last post, it’s been a lot of closed doors for me as I tried to get into various clinical trials. And then, all of a sudden, I essentially received an invitation for a new trial that had just gone into the expansion phase. After reviewing medical information we frantically provided, they scheduled me to come in to sign the consent form and do a bunch of tests and scans. After having struck out with three prior trials, we were ecstatic!
However (gawd how I hate “howevers”) I received a phone from the clinical trial nurse a few days later telling me that the trial director, Dr. G., did not think I had sufficient disease progression to qualify for this trial. In order to qualify, patients had to have failed three different chemo treatment regimens. He felt that from the last report that I was essentially still stable on my current Lonsurf chemo. I was still welcome to come to the appointment with Dr. G. and get set up as a patient for potential future trials and that Dr. G could change his mind after meeting with me. Note to reader, they know that even if I was technically stable it would only be a matter of when, not if, Lonsurf would fail. So it’s always good to have prospects lined up, basically I was being shipped down to the minor leagues.
Nonetheless, I accepted their challenge. That is how I viewed the situation.
We kept the appointment. To me they were absolutely wrong in their assessment. I had disease progression. Slow progression, but steady progression. I was a ship sinking, taking on water and the bilge pumps couldn’t keep up. But I was also in great physical shape for a cancer patient with nearly two years of constant chemo. Not to mention intelligent, science savvy, wonderfully charming and witty… a perfect specimen for their trial.
Several of the readers of this blog know me from my Mitsubishi days. Some were once my customers. They know my level of preparation and professionalism. I never showed up and just asked for an order. My customers and I planned for mutually beneficial business results based on logic. My meeting today was no different. I’m certain that Dr. G gets plenty of patients pleading for inclusion. This physician-scientist, a leader in immunotherapy trials, has no doubt become immune to such efforts. Frankly, I was not optimistic with my chances, but I have never allowed my pessimism to stop me from trying. I enlisted the assistance of Dr. P. and asked him to reach out to Dr. G. to discuss my case. I made certain that Dr. P knew my deadline. I wanted Dr. G to have the info, hopefully in the form of a conversation, from Dr.P before my meeting.
But, I had to have more than just my oncologist’s help, so I built a killer spreadsheet. I analyzed all of the scan reports. Instead of TVs, projectors and audio, I crunched the numbers on my left lung, right lung, and liver. It was crystal clear to me that this showed Lonsurf chemo was failing.
It is very interesting that at one point last fall I had planned to have both lungs radiated. They were both mapped and scheduled for radiation. But then Dr. M wanted a biopsy of an untreated tumor in December for information for off label drug uses or potential clinical trials. At the last minute we excluded the radiation in the left lung to allow for biopsy access. If that hadn’t been done, I would be excluded for many, if not most, of the cutting edge trials.
When we arrived in Phoenix yesterday afternoon I contacted Dr. P’s office to verify that he had contacted Dr. G. Unfortunately, nothing had happened. I was crestfallen. Now it would be up to a slimy salesman (that is me) trying to convince a scientist that he was in error. “Just trust me on this one doc,” was what I heard in my head.
It is Major League Baseball spring training in Phoenix. The thought occurred to me that I was going to be me wearing the collar, 0 for 4 on clinical trials. But Lee and I had a good birthday lunch for sister-in-law Susie and enjoyed a visit with my brother, Gino. Then Lee and I checked into our hotel and had a nice dinner and relaxed, game day was tomorrow.
My appointment with Dr. G was at 7:30am this morning. I was told to be there at 7:15 sharp. At 7:25 with no one other than Lee and l on premises, I was not feeling very confident. But the door was finally unlatched at 7:28, not that I was overly concerned or anything.
Our meeting with Dr. G was good from the get-go and then it got better. He reviewed the reports and suggested that Lonsurf was working., keeping my cancer in check. I gently disagreed and offered that that I had a spreadsheet that I thought illustrated that Lonsurf was not keeping my disease stable. I was shocked that he was genuinely pleased to look at it. It generated a conversation that he actually agreed with my analysis. However, he wanted to review my numbers. What!!! He didn’t trust a salesman?😄.
Dr. G. also stated he would call Dr. P. at lunchtime. Early this evening , the clinical trial nurse called me to let me know that both doctors connected and and they both agree I’m a good fit for this trial. One week from today we head back up to Scottsdale to sign the consent agreement and do all the tests! Not only did I NOT wear the collar, I hit a home run.
I was able to complete one pet portrait this month, Maggie Mae. A beautiful rescue border collie mix found malnourished and wandering the streets. She is now in a forever home and, I’m sure, spoiled rotten! Maggie..wake up there’s something I have to say to you…