Some negative news received on 8/28/09

After nearly 8 months of good news during the course of my treatments, I finally uncovered a new rough patch on my horizon, yesterday. I promised everyone, including myself, to be honest and open in this blog and that is what I'm doing here. My normal schedule in treatments in Chicago includes an Avastin infusion, once every two weeks, a visit with Dr. Nicholas, once a month, and a brain MRI, once every two months. This past week, I did all three. The time leading up to my visit was just fine. I feel strong, play golf at least 3 times per week and even went into see my colleagues at Lilly this past Wednesday (8/26/09) for lunch and a chat. Nothing could be nicer until I received the news about Ted Kennedy's passing. This immediately put me in a unsettled mood, but again, I was feeling fine myself. Patty & I drove up to Chicago on Thursday (8/27) and arrived at the Medical Center to get my lab tests and to meet a newly diagnosed GBM patient and his wife. They received my name and blog info from the hospital staff. It was a real pleasure meeting them both. We shared our experiences and wished them the best in his upcoming treatment. Then it was on to have my MRI at 4 PM. All seemed well and we left the hospital around 6 PM, checked into our hotel and had our dinner before retiring for the night. The next morning, it was up at 7 AM and back to the hospital to meet with Dr. Nicholas. In his physical exam and our discussion, everything seemed OK. But, he had not yet received the MRI results from the day before. I went up to the sixth floor to get my infusion only to have it aborted with an alert to return back downstairs to Dr. Nicholas' office. We did just that and at that time, Dr. Nicholas had received the MRI scans and informed us that there were signs in it that "the tumor has broken through" and had begun two new small areas of growth. In order to confirm his ( and the Radiologist's) suspicions, he ordered an additional test for me call an MRS or spectroscopic MRI. This test uncovers metabolic activity that is linked to either tumor necrosis or new tumor growth. For me, it was the same as taking another MRI, but this time, no contrast agent was injected. The test was over by 2 PM but we waited until 4:30 for Dr. Nicholas and the Radiologist to obtain and interpret the results. Unfortunately, they confirmed the original diagnosis of new tumor growth. Dr. Nicholas suspects that my tumor has become resistant to the oral chemo agent, Temozolomide (Temodar). Because of this negative finding, I was immediately removed from the clinical trial. But, fortunately, Avastin was FDA approved (this past spring) for secondary GBM treatment and so, it was administered to me yesterday as an FDA-approved drug. I then went back upstairs for my Avastin infusion.


Of course this was devastating news, but really not that unexpected given how cancer works. Even though I'm off the clinical trial, Dr. Nicholas is willing to stay on as my primary oncologist. After seeing the scans, he went over my options for new a treatment regimen. I signed a release allowing him to receive the tissue specimens that are being stored at the Fort Myers' hospital. He will send for them, analyze them in Chicago and we will then discuss our next course of action. I am not giving up and will look into his recommendations. He has ruled out several options already due to safety reasons including (another round of scalpel surgery), 6-week radiation courses, and implantation of a chemotherapy "disc" near the tumor. I am studying some new options including something that is called a "gamma knife" for removing those small re-growth areas. More updates to come soon.

Of course, I regret having to post this info, but "it is what it is". The good news is that I feel great with lots of energy right now so I might as well continue to live my actively life while I can.
Please accept my best wishes and know that my wife and I are doing our best to cope with this new development.

Thanks to all my friends and family for your support through these new, difficult times.
- Phil

Mid-August visit

Phil & Son, Nathan in Indianapolis on 8/14/09















Nathan and Chaim in Indianapolis on 8/14/09

Yesterday was my mid-August visit to the University of Chicago Med. Center for my Avastin infusion. We flew up early in the morning on Southwest, took a cab to the Med. Center and began my infusion at 10:00 AM. The needle stick went just fine (no pain) and except for the slow materials delivery from the hospital pharmacy, everything went perfectly. Because of the slow delivery from the hospital pharmacy, we just barely made it back to Midway Airport for our 12:45 PM departure back to Indy. We were the last two to board the plane. Had we missed it, we just would've had to take a later flight home. This is a special week because our son Nathan is visiting us from Hawaii. He will stay with me all week as Patty will be leaving today to visit her Mother in Ocala and provide some relief for her sister, Bobbi who has been there since Patty's Dad passed away in June.