We arrived in Chicago Thursday afternoon (9/15), checked into our hotel, and got some rest for our Friday appointment at Rush University Medical Center.
Today we met the Rush oncology team, led by doctor Aiken. They took a little blood for testing, did an EKG, put me through the standard neurological exam (hop on one foot, touch my finger to my nose then the doctors finger, follow the light with my eyes, reflexes, etc.). By the way, I pass this test every time with flying colors. Then they explained the clinical trial to us and fielded questions. He began with the bad. We’ve always known there is a 33% chance I can get placebo. There are a few milestones along the way where I could be disqualified, the first of which is the apharesis on Monday. We have one shot to get all the white blood cells required for the trial. Apparently the process failed for a couple of other patients. They were both small women. The doctor thinks I’m “stout” enough that it shouldn’t be a problem. If it’s not successful, there just isn’t time to do another one. Radiation and chemo typically need to happen between week four and six after surgery and we are almost at week seven.
All in all it was a good visit. The staff was incredibly accommodating and helpful. The team was optimistic and straight-shooting (see Heavy Stuff below, or skip it if you’re not comfortable with death talk).
More good news: The apharesis team said that I should load up on protein and calcium for Mondays procedure. They said I was all clear to eat just about anything I wanted and a glass of red wine wouldn’t be a bad idea either. This is great news considering we had reservations at Alinea tonight.
We had dinner tonight at Alinea — an amazing restaurant. The architecture, design, flavors, ingredients, creativity, presentation, staff — everything was phenomenal. Usually you need to make reservations months in advance. We got on the cancellation list and luckily someone must have cancelled. But Tina had written a compelling email to the restaurant and I think this played a part in our getting in. You see, the head chef and partner, Grant Achatz, had a stage 4 cancer of the mouth, from which he is fully recovered. It’s an inspiring story.
The meal was 18 courses and lasted three and a half hours. Eighteen courses of the most amazing, complex, creative dishes I’ve ever seen. Tina got the wine pairing and I got to sip on them without having to be covert. I just can’t describe how enjoyable the entire experience was.
At the end of the meal I braced myself for the (justifiably) steep check when the waiter informed us that the bill had been taken care of. All he would tell us is that someone called to take care of it and wanted to remain anonymous. We were floored. We can only say thank you here and hope the benefactor knows how much we appreciate the amazingly generous gesture.
I’ve been wondering how this cancer actually kills someone. So I asked Dr. Aiken and he explained. Typically, a GBM is discovered and successfully removed (gross total resection). Patients are monitored regularly. If there is a recurrence, can’t they just remove it again? Well, the answer is yes but here’s the deal: sometimes these tumors occur in an ideal location (as mine did). They are easy to access and not in critical parts of the brain. They say a huge chunk of your right temporal lobe could be removed and you’d be just fine. But the tumor could pop up in a more critical area and somewhere that is difficult to access. Removal can leave a patient in various states of… disability. It becomes a quality of life issue then. So we really have to make some tough decisions about where the line is that separates worth living or not. Needless to say this was a very difficult conversation for Tina to listen to. For me, not so much. Maybe that’s denial at work.
I’ve officially met the criteria for a clinical trial being conducted at Rush University Medical Center in Chicago. This is good news. It is a Phase II trial which was named as one of the 100 Great Investigational Drugs for 2011 by R&D Directions Magazine.
“We are excited with the early promise ICT-107 has demonstrated in extending both progression-free and overall survival in patients with GBM, with no serious adverse events reported to date,” said Manish Singh, Ph.D. President and CEO.
Tina and I will go to Chicago next week for lab work and apharesis (extracting cells from my blood). Then we can return to Atlanta and start radiation and chemo. In the meantime, a vaccine will be made from my cells and some experimental stuff. That will get injected into me. Actually, there’s a 33% chance that I’ll be injected with placebo. Then they monitor how much time passes before the cancer returns.
It’s still a gamble, but better than betting on nothing.
Here I am getting fitted with a radiology mask. It will hold my head securely in place and ensure that radiation beams are delivered precisely. I was also instructed on taking the oral chemo treatment, Temodar.
We are moving forward with the Standard of Care treatment (radiation and chemo). Emory currently has one Phase II clinical trial available to me — RTOG 0837. It uses a drug called Cediranib which has a pretty nasty list of possible side effects. We are not willing to travel that path right now.
Tina, in her tireless efforts, found another Phase II clinical trial being offered by Rush University in Chicago called ICT-107. This study has some encouraging write-ups and basically no side effects. Rather than testing an experimental drug, it is testing immunotherapy — creating a vaccine from my own white blood cells. I had blood work taken today to see if I qualify for the study.