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.

Post #4: Diagnosis, Decisions and Surgery

It didn't take the emergency room doctors very long to figure out that I had a big problem. I was first attended by a Dr. Ashraf Anani (internal medicine). After physically examining me, Dr. Anani, admitted me into the hospital and I entered a private room. More from the description of my physical and mental behaviors, he ordered a CT scan of my head. Initially they did think that I had a stroke. There was swelling and damage apparent inside my skull. This was causing a shift in the normal position of my brain in my head. The fact that I had way too much physical and mental function present in the face of that much damage suggested that it really wasn't a stroke. The staff at Lee Memorial Health Park quickly brought in a neurological surgeon, Dr. Saman P. Javedan. He ordered a full head MRI for me.

That's when it was revealed that I had a large brain tumor in my right temporal lobe. I was no longer in the denial stage. I knew I had a big problem but I was still "with it" enough to try to figure out a good course of action

The large tumor was pushing my brain around inside my skull. I was a great risk for seizure. They immediately put me on dexamethasone and Dilantin. I was advised to have surgery in Fort Myers. I knew very little about the hospital and doctors in Fort Myers. I desperately wanted to fly back to Indiana for the surgery. I started making contacts back to my friends and former colleagues in Indiana to try to find a surgeon who would work on me back there. There were several choices at IU Med Center, including Dr. Eric Horn. After several telephone conversations with friends and doctors, it became apparent that any kind of travel was too risky and I had to have surgery in Fort Myers. Having a seizure on an airplane or in an airport was a recipe for disaster.

I did a little of my own research on Dr. Javedan and found that he was very well trained (Johns Hopkins and M.D. Anderson) and qualified. I decided to stay put and have the surgery.

Later Monday night, I was transferred by ambulance to The Lee Memorial main hospital on US41 (ironically near the golf course I played) into a open room in the critical care unit.

No doubt, because of Thanksgiving, my surgery was held up until that Friday, November 28. My entire family came to the CCU on Thanksgiving night, 11/27, with turkey from home. I couldn't eat very much of it but I sure enjoyed having them all there with me that night. You all know about CCU units. Lights on 24/7, patients have full heart and oxygen monitors on, and of course every 4 hours a nurse wakes you to take and record your vital stats. My surgery would come the next morning.

Dr. Sam P. Javedan did the 4.5 hr surgery on Friday, November 28th. They removed a piece skull (along with the flesh and scalp) and cleared out as much tumor as they could. They call this surgery, "de-bulking". The surgeon described this procedure as like removing an avocado pit from the fruit. It's a delicate, imprecise surgery that can do more damage than harm if not carefully done as the tumor itself is woven through the brain tissue as an intrinsic mass. He replaced the piece of skull, and "stapled" my scalp back on. I came through the surgery without any complications and was actually hungry for dinner that night. I was in intensive care for 3 days before the surgery and 2 days after. Obviously, there was a lot of pain involved. I then went to a private room and was released from the hospital in good shape and function at noon on December 2nd.

Post #3: Wedding in Jamaica

Our Daughter, Sarah's Wedding in Jamaica

ON THE 19TH OF November, my whole family traveled to Jamaica for our daughter, Sarah's destination wedding. While on the trip there and while there, I suffered from "stroke-like symptoms". My face was sagging, I was drooling a little, and my left leg was dragging a little. My wife and family noticed all this while I didn't give it much thought. I was also getting easily confused and had problems finding my way around at the all-inclusive "Couples Swept Away" Resort in Negril. It is a very beautiful place and the staff there was great. We had a total of 11 in our wedding party present from the Marder and the groom's (Thomas Spurlock) side. My whole family wanted me to seek emergency medical attention in Jamaica. In spite of my symptoms, I totally refused treatment because I knew that the medical staff at the resort would immediately send me back to the U.S. and I would miss the wedding. I think that my exact words were: "the only way that I'm leaving now is lying on a gurney". The wedding turned out to be beautiful. I was included in the photos and have no regrets about my attitude and actions that took place, much to my family's chagrin.

After the wedding (Nov 22), we were able to work with airline and move our flight up to go back to Fort Myers the very next day (Nov 23). We made the long, connecting flights back to Fort Myers and got in after midnight, early Monday morning. We went to our home in Fort Myers and slept until 6 AM, Monday morning. After a quick shower and breakfast we drove to Lee County Memorial Hospital Health Park and entered at the emergency room. Patty & I walked in, greeted the staff they asked what was wrong. In my own way, I told them: "my wife thinks that there is something wrong with me". That's when my troubles were really revealed.

If you are interested in seeing some photos from my daughter's wedding, click on the following link:
http://philmarder.com/marderhomepage/Bananalbums/Sarah_and_thomas/index.html

Post #2: How it started

(I'm aware that many have heard items from this post before but for completeness, I'm reviewing them again in this post).

It really started with a very low grade headache in the right temple of my head. It really didn't hurt that much and was totally controlled by Tylenol and Ibuprofen. This began in early November and I didn't think too much about it. I thought that perhaps it was a side effect of the flu shots we got on Election Day, Nov. 4.

My wife, Patty and I voted that day in Indiana and then drove from Indianapolis to Fort Myers, FLA to our winter home there. The drive down was without problems, stopping in Atlanta to see our son, David and then in Ocala, FLA to see Patty's parents, Dick and Helen Rohde. No problems at all. We arrived in Fort Myers at our home on Sunday, November 9. I played racquetball once down there. I believe that it was on November 12. Something was a little funny that day in that I couldn't seem to get out of the other players' way during the game. Plus, my game was atrocious; worse than I usually play. Didn't think much about it, however.

Post #1: Introduction and background

Thank you all for being supportive and interested in my health crises. These are hard times for my wife (Patty) and me. But we know that all of our family, friends, and former colleagues want to know what has happened and more importantly, what is current and what our plans our.

We love telephone calls but with all of you out there, sometimes it becomes a bit too much logistically for us to handle with call-backs, etc. I'm not saying not call.
Also, sending out individual emails to a long list also becomes burdensome.

I think most of you understand two things about me. 1) I really like to keep busy, especially doing stuff on the computer. In fact, that's how we ended up in Chicago today through computer research. 2) In my current situation, keeping busy keeps my mind off of the many negative aspects of what I'm going through or what is in the future for me.

So in an attempt to do all of this, I'm setting up this new BLOG: "Phil's GBM". It won't be anything like what I've done before. There will no photos and not very much to laugh about. Just words and updates. So, if you want to find out the latest news, just click and/or bookmark this link:

http://philsgbm.blogspot.com/

Feel free to pass the link on to anyone. This whole thing is not a secret.
Thank you all again for your love and support as we travel this difficult path.

- Phil Marder