Post 13: In Indianapolis Dec 24 – 31, 2008

Post # 13: Traveling and staying in Indianapolis Dec 24 – 31, 2008

It was an easy drive back from Chicago to Indianapolis on December 24th. The weather was clear and the traffic was light. We arrived at the house by 5 PM, turned up the heat and relaxed before having a dinner we salvaged from the freezer. The problem was however that all the food stores were closed both on this day and the next (Christmas), but somehow, we made it through by going to the Chinese Restaurant that is always open for Christmas. On Friday, we went to our favorite Mexican place near Keystone Ave and enjoyed it a lot. Saturday and Sunday were for rest, relaxation and packing for our return to Chicago on January 1st for our major stay.
On Monday, December 2th, Patty and I drove to the Red Lobster Restaurant on Shadeland Ave in Indy to meet with my old group from Lilly. Present were Larry Mann, Lisa Green, Rita Bowers, and added to that was my good friend and Colts’ buddy David Abbott. We had a great meal and caught up on everything that they are now involved with in their transition from being Lilly employees to now being employees of Covance Labs after the group was sold off to Covance in August. It was great to see everyone again. After lunch, Patty drove off shopping and David Abbott and I went driving around Indy for the purpose of transferring our Colts ticket account into his name.

Post #12: My drug Matrix

Post # 12: A matrix and schedule of all the drugs that I'm currently taking
It's hard to believe the number and amount of drugs that I'm taking for treating this disease. It's a full time job just keeping track of when and how much of each one that I have to take. Here's a small graphic to give the schedule that I'm on. I'm not even going to go into the indication or side effects for each one. The idea is just to let you know what I'm dealing with.
Click on the graphic to make it bigger and easier to read.

Post #11: Meeting Dr. Nicholas on Dec. 24

Post 11, Meeting Dr. Nicholas on Dec 24th and driving to Indy.

We arrived at the hospital around noon on Christmas eve and went to the neuro-oncology desk to pick up my lab order. Another stick in the arm and then we went to lunch for about an hour until they could measure those liver enzymes. We went up to Dr. Nicholas' area and met with Jean, our nurse coordinator who indicated that my enzymes had indeed gone down in those 5 days from 120 to 89. So, they were trending down after a short time and the changes in meds. This was encouraging. We then met the lead investigator, Dr. Nicholas who was as nice as can be. The previous week, we had met his associate, Dr. Lukas who works closely with him. Dr. Nicholas asked me if I wanted to see and compare the pre and post MRI on my brain before and after surgery and I finally had the courage to look at those images. I have to say, that the surgeon in Fort Myers (Javedan)) did do a good job of getting a lot of tumor out. But, there was still quite a bit there. The residual was to removed by the radio-oncologist, Dr. DeMasi via the focused beam irradiation. I found out later that there were 7 distinct regions to target there as part of my 6 week course. Dr. Nicholas again went through the order of the clinical trial and reinforced the fact that my enzymes had to come down to 70 by January 5th, if I was indeed going to get in. He also lowered my DEX dose down to 2 mg/ TID. So, I was now down from 6 TID to 2 TID, a 3 fold reduction. More about this later. By 2 PM, we packed into our Honda and headed down to our house in Indianapolis to spend Dec. 24th to Dec. 31th there for a brief respite that was quite welcomed.

Post #10: Dec 20 to 23 in Chicago

Post #10: In Chicago until Dec. 24th.

We tried our best to keep busy while waiting at the Comfort Inn in downtown Chicago before our visit with Dr. Nicolas on Dec. 24th. We did a little shopping near the Water Tower, went out to eat and waited for our next visit with Dr. Nicholas scheduled for Dec 24th at noon, all the time keeping my mind on trying to get those liver enzymes down. I sent a note via Linkedin to an old friend, Terry Gladman in hopes that he was still living near Chicago. I knew Terry Gladman from my old Ohio state days when we both resident advisors in the dorms there. Years later, I bumped into Terry at Lilly corporate center where surprisingly I found out that he was working sales for Lilly in the Cleveland area. We rekindled an old friendship at that point and kept in touch again for several years. Later on, Terry left Lilly and went to Chicago to work for Searle. This was in the late 1990s. We visited Terry up in Chicago several times while he was working there. Terry’s life changed again during that time. He and his first wife split and he remarried, and had 4 children, (much later in life that Patty and me). Around 8 years ago, Patty and I again rekindled our friendship and drove up to Chicago to meet with Terry, his wife Margaret and his four children. We even played some golf together. Unfortunately, we lost touch again until this moment.It was just a stab in thin air to try to find him on a professional networking site called Linkedin. In fact, I did find him there, sent him a note and he responded. Turns out that Terry (at my age!) took a high senior position in pharmaceutical advertising with Novartis in Switzerland. I thought that he was now living there and in fact that is his home base. Fortunately, he was back in Chicago right now for the holiday season. We arranged for Patty and me to lunch with Terry and his wife Margaret near our hotel on Monday, Dec 22nd and had a great time catching up and remembering old times. It was very enjoyable for all of us.

Post #9: Dec. 19, hosptial, condo, liver enzymes

Post #9: Dec. 19-20, hospital, shopping, condos, liver enzymes

We returned to the hospital the next day (Friday, Dec. 19) for my post surgery MRI scan, a blood draw. and consult by Dr. Nicholas and his staff. This day at the hospital, went a lot better for me. The MRI went well without incident and so did the blood draw. Jean Arzbaecher, RN (essentially, the nurse coordinator for the doctors' clinical trial) went through the entire clinical trial consent form with us, step by step, explaining along the way how the whole thing works. In summary, it begins with 6 straight weeks of the standard, FDA-approved, GBM treatments that would have taken place anywhere else in the U.S. This includes what would have taken place in Fort Myers or in Indy. The schedule is for focused beam radiation to the tumor area Monday-Friday and 7 days/week, oral chemotherapy (Temodar pills) taken at night an hour after taking an anti-emetic medication (Compazine pill) an hour before bedtime.

My next appointment was scheduled by their office for Wednesday, December 24th at noon when we would meet the Lead Investigator, Dr. Nicholas, himself. After that appointment, we were free to return home to Indy for about a week. We had planned to spend the weekend hunting for a condo in downtown Chicago. It was an onerous task, driving around the city, looking and deciding on the neighborhoods and how much to spend per month. Also, trudging through icy slush of the city and in the brutally cold weather, we needed to get some warmer clothes and dry, over-the-ankle boots. So, shopping was also on our list for the weekend. We both purchased long down coats at the Michigan Ave shops that could protect us down to -50 deg F.

Then, serendipity stepped in for us. Our good friends from Indianapolis, Elaine and Bob Sandy were also in Chicago on December 19th attending a wedding very near our hotel. We met with Elaine around 6 PM and found out that also at the wedding; she had heard information from a “friend of a friend” that someone was trying to rent a condo near the Lincoln Park area for a very good price. We totally lucked out. It was just what we needed. Later, we spoke with the owner and arranged for a look-see over the weekend. It turned out to be a perfect solution for us. The price was right, the location was great, and the apartment included a reserved, indoor parking spot and a 24 hour doorman. The rental arrangement was informal (without a lease) and the owner told us we could have it for as long as we wished, renting month to month. On Sunday, December 21st we visited the apartment and I wrote a check for the first month. Our search was over. What a relief.

The only downer came when Jean Arzbaecher from Dr. Nicholas’ office called my cell (late on Dec. 19) to let me know that my liver enzymes were higher than normal and needed to come down for my final acceptance in the clinical trial. My levels were somewhere over 120. Most likely, this increase in liver enzymes was due to the heavy-duty medications that I am taking. Dilantin, evidently is a potential culprit. In addition, Jean advised me to get off any Tylenol, Ibuprofen, and all alcohol and also switched me from the anti-convulsive Dilantin to Keppra, which is less likely to cause this effect. Also, they lowered my DEX dose from 6 mg TID to 4 mg TID. The cutoff value for trial entry was 70 and Dr. Nicholas said that it is FDA mandate without any flexibility. I made the switches in meds and began hoping for the best.

Special Post for January 2nd, 2009

Special Post for January 2nd, 2009

Dear family and friends. Thank you all for following our journey through these difficult times. Although I've been metering out the story slowly, I have to interject at this time that I just found today that I have been accepted into the clinical trial. This is the best news that we received to date and the sole reason that we came to Chicago. More details will follow but we are elated.

Post #8: Dec. 18th, afternoon session

Post #8: Afternoon Session on 12/18/08

We finished up with Dr. Nicholas’ staff by 11:45 AM and met a friend from the flow cytometry community who happens to work at the same hospital. Her name is Julie Auger and she, like all my network of flow cytometry people have been friends and colleagues for around 20 years or more. The three of us had lunch in the food court, caught up on old times and discussed the current situation and her willingness to help out in any way. Julie informed us that she had been treated at the same hospital and assured us that we were in good hands.

Dr. Nicholas’ staff had scheduled an appointment for me at 1:30 PM (same building) with the radiation oncologist, Dr. Vincenzo DeMasi, M.D. Dr. Nicholas’ team works closely with Dr. DeMasi and so he was quite aware of my situation. He and his associate examined me and let me know what the schedule was for the afternoon. It didn’t sound too bad or too long, but it turned out to be very, very tough on me.

The plan should have taken about 1.5 hours but it ended up being closer to 3 hours. They took me downstairs to the CT room for the purpose of making a mold of my head that would precisely align me for the radiation treatments. I put on a gown and entered the CT room where the technicians informed me of the procedure. Step one was making a cradle for my head to sit in. This was done by making a foam mold from a liquid shaken up with a activator substance and pouring that onto a shelf beneath my head. The issue is that it probably heats up to over 110 deg F, while the plastic sets up and you cannot move your head for 15 minutes while it is setting making quite uncomfortable. After it sets up, they push you (on the mold) into the CT scanner and see how you line up by checking the images from the scanner. My images did not line up well. They ended up doing this three times and I was very hot and worn out doing this for over an hour. Then, came the real fun. That’s when they put a warm, plastic mesh mask over my face and connected it to the cradle and pushed me back into the CT scanner. I couldn’t see and started to panic. Moving around is not what they wanted me to do. All I really needed was a reassuring voice around me, telling me that I was OK and how much longer I would be in the machine. Finally, it was over and I was literally shaking as I walked out of the room. The technicians apologized profusely but I was still shaken badly. The real issue was that they were trying to train a new employee while working on me and their attention was split. We met again with Dr. DeMasi and he too apologized for the incident and assured me that nothing like this would happen during my treatments. This incident was the only negative that I can think of during my visit to the center. We took a taxi back to the hotel and had dinner and planned to go back to the hospital, the next day (Friday) for another.

Post #7: 1st Meeting with Dr. Nicholas’ Staff

Post #7: Meeting Dr. Nicholas’ Staff on 12/18/08

The drive on December 17th from Indianapolis to Chicago was difficult. First, remember, that at this point, I was prohibited from driving due to my condition which puts us in a very unusual position for the first time in 38 years of marriage: Patty does all the driving and I sit next to her, trying to keep my mouth shut about her driving. It’s stressful for both of us. We got a late start from Indy that afternoon and drove north on I65 towards Chicago using our trusty Garmin GPS unit as a guide. The drive from Indy to the I80/I94 west exit ramp was easy. Then the fun began. There was plenty of traffic and it was getting dark as we swung north on I94 towards the famous Chicago Loop. So you know, Patty does not enjoy driving in busy city situations and on top of that our GPS kept giving way too many directions like “stay left” or “keep right”. We faced all this while navigating through lots and lots of crazy Chicago drivers. We exited near Ohio Street where we found our hotel, The Comfort Inn and Suites at 15 E. Ohio St., right in the “Magnificent Mile” commercial district. It was an exhausting and stressful drive but the hotel and room exceeded our expectations. We checked in and walked around the area finding a restaurant nearby. It was brutally cold and the wind was blowing hard on that Wednesday night. Clearly, we did not have proper clothing for Chicago in the wintertime.

After a good night sleep we prepared to travel to the University of Chicago Medical Center for our 10:30 AM appointment with the staff of Dr. Nicholas’ group on that Thursday (12/18) morning. After the stress of driving through the city the night before, we decided to take a cab ride to the doctor’s office instead of driving the 10 miles through the city. But, to our chagrin, dealing with the Chicago taxi drivers was no small trick. We were “turned down” by the first 3 taxis that refused to take us there. The fourth taxi did take us there and explained to us that the cab drivers don’t want to go to the Medical Center in the morning because they won’t get return fares. Of course, that’s patently illegal as well as deceitful to us. The other issue we noticed near the hotel was the blatant disrespect for pedestrians in the crosswalk by the Chicago drivers. You really take your lives in your hands walking through the streets downtown. The locals told us: “that’s the way it is here”. Obviously, we’ll keep up our watch.

We arrived at the Center for Advanced Medicine, entered and arrived at Dr. Nicholas’ office on time. We knew that Dr. Nicolas, himself, was on vacation and so we met with his chief assistant, Jean Arzbaecher, RN., and Dr. Nicholas’ associate, Dr. Rimas Lukas, M.D. These people could not have been nicer to us. They welcomed us and explained the entire situation to both of us. I was given a quick physical exam in their office after we spoke for about a half an hour. We felt very comfortable in their facility both with their abilities and welcoming attitude.

Post #6: Clinical Trial NCT00590681 in Chicago

Post #6: Clinical Trial NCT00590681 in Chicago

My colleagues at Lilly suggested that I scan the following website to get more information on clinical trials: http://clinicaltrials.gov

And on that website I found the following link:
http://clinicaltrials.gov/ct2/show/NCT00590681

I was intrigued by the science and use of Avastin (Bevacizumab a monoclonal antibody drug made by Genentech) for use in front line therapy in this Phase-2 trial. Avastin has a proven track record for successful secondary treatment of metastatic colorectal cancer. It’s never been used however in brain cancer. The drug works by binding and blocking a protein called vascular endothelial growth factor (VEGF) that blocks the formation of blood vessels that feed new tumor growth and thus the spread and establishment of new tumor growth.

While not as “sexy” as immunotherapy at Duke, the science sounded sound to me and I sent to link to several at Lilly including George Sandusky, Richard Gaynor, and Don Thornton. All agreed that it was a reasonable approach. Geographically, Chicago is a lot closer than Duke to Indianapolis, so that was another plus.

Later that morning (December 9), I “clicked” on the link for the clinical trial NCT00590681 which allowed me to email the lead investigator, Dr. Kelly Nicholas, at the Duchossois Center for Advanced Medicine at the University of Chicago Medical Center on 5758 S. Maryland Ave. Dr. Nicholas emailed me back the next day (December 10) indicated that the trial was still open and then called me in Florida the on December 11 and we had a phone conversation. I filled him in on all the details and told him about my scientific background, he asked me to have my medical records faxed to their facility and Patty also helped me ship the CD versions of my CT & MRI scans from the Florida hospital.

While not yet formally accepted into the clinical trial, Patty & I made the decision to leave Florida and seek treatment in Chicago. It was good for both of us to finally have a plan and begin working on it. It felt like we were moving forward.

With help from our neighbors in Fort Myers (The Hammills and the McManus’s) we prepared our house there for possible rental and boarded a plane on Tuesday, December 16th for Indianapolis. Our good friend, Elaine Sandy picked us up at the Indy airport and our Seidenstein friends dropped off a welcomed dinner for us at our house. Our daughter, Sarah and husband, Thomas joined us for dinner at our house in Indy on this 16-Dec2008. We were at our house less than 24 hours before beginning our drive to downtown Chicago on Wednesday, December 17th.

Post #5: Surgery Recovery and Deciding on Follow-up

Post #5: Surgery Recovery Deciding on Follow-up

While in the hospital during the last few days, I was visited by several physicians to discuss my follow-up care. The standard treatment regime involves focused beam radiation through the skull aimed at remaining tumor with simultaneous, daily, administration of an oral, chemotherapy drug, Temodar. The radiation is administered 5 days/week at an approved location and the Temodar is taken at home along with an ant-emetic agent, 7 days/week in the evenings.

Before my release on December 2, the doctors at Lee County Memorial were strongly encouraging me to begin planning for treatments in Fort Myers. I met both a clinical oncologist, Dr. Silvia A. Romero and a radiation oncologist, Dr. Alan Brown (21st Century Oncology, Ft. Myers), before my hospital release. Dr. Brown was anxious for me to begin the “mapping” of my head and beginning and making the radiation plan while Dr. Romero wanted to get the Temodar ordered for me because it can take some time. But, I wasn’t sure that I wanted to be treated in Florida.

Even with this standard treatment regime, the two year survival is very low with GBM. I’m a drug researcher and a fighter and our family is fortunate enough to have the means and the wherewithal to seek out and find alternative treatment regimes. I really wanted to get into some kind of clinical trial where my chances might be better. So, after my release from the hospital, I put off making the visits to the local treatment centers in Florida and began doing research on my own and through my Lilly colleagues.

At the present time, probably the most famous brain tumor research group in the country is located at Duke University in North Carolina, where Ted Kennedy has been treated. They are doing some cutting edge stuff, including immunotherapy protocols. The group is headed up by Dr. Henry Friedman at The Preston Robert Tisch Brain Tumor Center in Durham. A former colleague at Lilly (George Sandusky) filled me in on the details here. He advised me to call Friedman directly and I did. I had a personal conversation with Friedman that same afternoon, describing my situation. He agreed to look at my case, but only after receiving post-surgical MRI scan data. My Florida surgeon would not do this for me until the staples were to be removed from my head on December 19. So, there would be a hold-up with no guarantee for acceptance by Duke. I began looking for alternatives that would allow us to move faster to begin treatments.

The next two options were University of California at San Diego and the University of Chicago Medical Center where an interesting clinical trial was still open to enrollment. As my research continued, I made my first contacts from Florida to the staff in Chicago on December 11, 2008 via an email message.