Old Friends and a New Plan

Phil with son, David during Labor Day weekend

Phil with Chaim over Labor Day, 2009

After the "downer" from my last visit in Chicago, this week turned out to be much better. First off, our son, David, flew up from Atlanta to be with us over Labor Day weekend. It's always great to see our distant kids (David & Nathan) as we don't see them very much because of the distance and expense of travel. We love seeing daughter Sarah with her husband, Thomas, but that's a bit easier because they live in Indianapolis.

Then to make the week even better, I was able to meet and have dinner with with my very good friends and former Lilly colleagues, Chad Ray and Bob Dean. We shared a shrimp cocktail at St. Elmo's and then had dinner at Palomino's. Thanks also goes to Kerry Oliver of Chad's new employer: Radix for picking up the tab. But that was secondary to seeing my good friends.

On Thursday, 9/10, just a day before our scheduled trip to Chicago for more Avastin, I received a phone call from my Oncologist, Dr. Nicholas. He told me that his team came up with a "new plan" for my brain cancer treatment. He told me that it would be detailed during our visit the next day, although, he would not be there, his associate, Dr. Lukas would spell it out.

So we rose bright and early on Friday, 9/11, and flew up on Southwest airlines to Midway Airport. We took a cab in to the University of Chicago Medical Center and told Dr. Nicholas' head nurse, Jean that we would stop back in after my Avastin infusion. The infusion went just fine with no problems and then, we went back to the 4th floor and met with Jean and Dr. Lukas. Dr. Lukas spelled it out and here it is: I will be going back on Temodar but at a different dose and timing schedule. Furthermore, I will begin treatment with a high dose of Accutane, a retinoic acid derivative. There is published evidence that there has been some efficacy in this 2-drug protocol. I begin the regimen on Monday, 9/14. It's a much higher dose of Accutane than is normally used for treatment of acne. In any event, it's a new plan and we hope that it helps.

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.

An easy trip to Chicago

Friday, July 31, 2009. We completed our 1-day trip to Chicago today for my treatment and appointment with Dr. Nicholas. We flew up there at 8 AM and back late afternoon. We left Chaim at the vet overnight in order to get to the airport on time. Everything went as smooth as could be expected. The flights were on time, my labs came back "perfect" according to Dr. Nicholas and the Avastin infusion went flawlessly. No problems with the needle sticks this time. All-in-all, a very good and successful trip.

Phil & Patty's mini-vacation to N.J. & N.Y.

I've been feeling pretty good these days so Patty & I decided that we could take a mini-vacation to New Jersey and New York City. in order to see old friends, family, and two Broadway shows. It is actually one of our favorite things to do. We arrived at Newark airport during the late afternoon of Friday, July 24th and drove north to East Rutherford to our hotel, The Fairfield Inn and then met our friends for dinner at "The Crow's Nest" restaurant. The next day, Patty & I took the bus into New York, had lunch at the Carnegie Deli and saw the Tony award winning musical, "Billy Elliott". The plot was different than most plays we've seen but the singing and dancing were outstanding. After the show, we went back to the Hillenius' for some Angelo's Pizza. It was as good as ever. On our next day, Sunday, the Mohns and Hilleniuses drove down to our hotel and we ate lunch across the street at "Charley Browns". Then we rode into N.Y.C together and parked near the Lincoln Center for Performing Arts and saw the latest revival of the play, "South Pacific" at 3 PM. It was wonderful. After the play we left the Mohns and Hilleniuses to go home without us and walked through a rain storm to meet my cousins, Phyllis and Ira Bergman for dinner at the Greek restauran,, Molyvos. We took the bus back to N.J. after dinner and went back to N.Y.C., one last time on Monday. We visited Coney Island and it's Aquarium and then Phil rode the famous Cyclone Roller coaster before we ate a Nathan's hot dog for lunch. On our final night (Monday), we went up to Bob & Ellen Mohns for dinner before returning home to Indy on Tuesday morning. Then, on Friday (7/31) morning is back to Chicago for another Avastin treatment and meeting with my oncologist, Dr. Nicholas. Needless to say, we had a great time on this mini-vacation.

Phil splits a corn beef and pastrami sandwich with Patty at The Carnegie Deli before the Saturday show

Outside the Imperial Theater before the show, "Billy Elliott"

Phil with his old buddies enjoying some Angelo's Pizza.

Bob & Ellen Mohn, Patty & Phil, Harry and Maureen Hillenius at Lincoln Center before the show, "South Pacific"

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Patty, cousin Phyllis Bergman, and Phil at Molyvos Greek restaurant in N.Y.C., on Sunday, July 26

Phil rode the famous "Cyclone" roller coaster at Coney Island in N.Y. on Monday. It was quite a thrill.

Back from Avastin July 17, 2009

Back from Avastin:

This time it hurt.

I guess you could call it a minor issue but anytime you suffer some pain it doesn't seem minor. We flew up early on Friday, Jul 17 on Southwest Airlines feeling a bit of trepidation after the Southwest's problems earlier in the week (click here to see details). Our plane had no problems as we arrived early at Midway Airport, took a taxi to the Medical Center and went up to the 6th Floor to get my infusion at 10 AM. All seemed well and ahead of schedule until the nurse had problems sticking the cephalic vein in my lower right arm. She failed in her first attempt and then went back into the same vein, only higher on my arm. It hurt plenty this time with the stick and worse yet, it continued to hurt for a half hour as they waited for my Avastin to show up from the hospital pharmacy before my infusion could begin. This is the worst time that I've had in their infusion suite since starting the ordeal in March. Let's hope that it doesn't happen again. The Avastin dripped in OK into that vein and I had no side effects. Following my infusion, we took the taxi back to the airport and unfortunately waited an extra two hours for our delayed flight back to Indianapolis. We picked up our dog, Chaim, at Sarah & Thomas' and went home. I took the bandages off my I.V. spot and noticed swelling and bruising at the needle sites this time. As I said, it was a minor problem, but it did hurt quite a bit and was an unexpected problem based on my prior experiences. I hate to sound like a baby but it's one of the few issues that I think could have been avoided at their clinic.

Two days at the University of Chicago Med Center

Patty and I have returned from Chicago having gone through the 2-day visit to the medical center that happens for me every two months if I continue to do well in their treatment protocol. For these visits, we drive both ways as we need our car to get back and forth to the hospital from a hotel. As usual we left our beloved dog, Chaim, with Sarah and Thomas and drove up on Wednesday, July 1. This was a different schedule for us due to the Independence Day holiday week closing of the clinic there on Friday (July 3). On the way to Chicago, we stopped at my now favorite place for lunch: Culver's, and had their featured item, the "Butter burger". We really don't know why they call it that, but it sure is good. The drive up was not too bad and we arrived at the clinic at 3:30 PM Chicago time for my MRI appointment. I think you know from my previous posts that these MRI's are not fun, but this time, it was a little easier with less waiting time and only 45 minutes in the loud and uncomfortable chamber. After this, we left the hospital and drove and checked in to our hotel which is near Midway airport. We had our usual dinner at Friday's restaurant and settled in for the night at the Fairfield Inn. The next morning we drove back to the medical center and had my appointment with Dr. Nicholas' partner, Dr. Lukas. Dr. Lukas examined me and showed us my latest MRI scan results. Patty and I were both happy and relieved to hear that tumor remains held in check and my disease has not progressed. My blood counts and labs are also in excellent shape. We couldn't have received better news. From Dr. Lukas, we went to the food court, ate lunch, and then it was up to the sixth floor for my Avastin infusion. The infusion suite was backed up, 1 hour behind schedule, making it a bit harder. My Avastin infusion again went without incident, we left the hospital and began our 3.5 hour drive home to Indianapolis. Sarah and Thomas brought Chaim up to our house for us and the four of us went out to nearby Ocean World for a sushi dinner.

A busy week in June

Patty & Phil at The Villages visiting Don & Carol Marder

On June 12th, I flew down to Ocala, FLA with my daughter Sarah and her husband, Thomas for the purpose of attending my father-in-law's memorials. When we arrived, we met up with the rest of my family (Patty, David, and Nathan) who also came in for the same reason. It's a strange combination of feelings that you go through attending these things. It's very sad for all of us to have lost Dick Rohde even at his advanced age of 83. Dick was a WWII hero whose ship was sunk by the Japanese and a beloved family member. But at the same time, it was wonderful seeing relatives that we rarely see in person. On Tuesday, June 16th, I flew back to Indiana with Patty, Sarah, and Thomas. Then, on Friday, June 19th, Patty and I flew to Chicago for my Avastin treatment which went flawlessly. Saturday, June 20th, was my wedding anniversary. Patty and I have now been married 39 years. We went to Palomino's in Indianapolis to celebrate. Nothing beats their crab and artichoke dip. Finally, yesterday, June 21st., my daughter Sarah and son-in-law, Thomas came over to our house in Indianapolis for a wonderful Father's Day dinner including T-bone steaks and a cake that Sarah baked for us.
All-in-all, a very busy week, indeed.

Slide show of our visit to Ocala for Dick's memorials: HERE
Slide show of my father-in-law, Dick Rohde: HERE

Early June Update from Phil

Hi everyone. On Friday, June 5th, Patty and I went to Chicago for an appointment with Dr, Nicholas and an Avastin treatment. The news on my condition continues to be good with a positive report on my condition from my doctor. (M. Kelly Nicholas). I told him that I was so happy to have chosen their group for my treatment and he told me that he was very happy to have me in his study. He told us that he was using my case as an example for his new GBM patients, partly because of my progress and partly because of my willingness to travel to Chicago every two weeks for treatment. On this day, we flew up on Southwest making it a one-day visit. We will return for more Avastin on June 19th and then again for an MRI on July 1st which tells the real, anatomical story. Our trip was tempered somewhat by the recent passing of my wife, Patty's father, Dick Rohde, the day before we went to Chicago. To see a short essay about my father-in-law and a photo slide show remembrance, click on the following link:
http://philmarder.com/marderhomepage/

A perfect day (for me) in Indianapolis

It was one of those days that I was happy to still be walking on planet Earth.
It was a beautiful spring day with cool temperatures and sunny skies.
I played golf in the morning and much to my surprise, I chipped in hole #9 for a birdie. This was my first birdie since discovery of my tumor and it felt mighty good. My final score wasn't great (97) but the beautiful weather and the birdie raised my spirits. I went home, took a shower and dressed for attending a service at our Synagogue (Indianapolis Hebrew Congregation, IHC). It was a special night there with a tribute to our Cantor, Janice Roger for serving our congregation for 30 years. This was also my first night to attend services at IHC since my diagnosis. It was great seeing friends there including our Rabbi, Jon Adland. After services, we went over to Elaine and Bob Sandy for a wonderful home-cooked dinner that we shared with them and Sally and Jeff Seidenstein and the Sandy's son, Steven along with his girlfriend, Courtney. All-in-all, it was a superb day and one that I was happy to feel physically strong enough to enjoy thoroughly.