Azixa Update and THanksgiving 2009

I’ve now had two treatments of Azixa at Northwestern Hospital in Chicago with Dr. Raizer’s group. The major concern was cardio toxicity, but I suffered no such effects. I also suffered no other side effects except for minor back pain from lying in a hospital bed all day. It’s really a two hour infusion and six hours of tests and waiting that makes for a long day.

We had a wonderful Thanksgiving together with our entire family. Our children traveled from near and far so that we could all be together.

Phil at the Colts' game and more about AZIXa

Phil wih buddy David Abbott at last SUndy's game vs the Texans.

After phone discusions his week, we hav finally set up some appointments for me to get started on the new drug (Azixa) trial. Patty & I Will travel to CHicago this week to sign the consent and have some sscreening tests done. If all goes well with the tests, Iwe will o back for my irst treatment on 11/23

Phil

Haloween 2009 at Phil and Patty's house

Haloween 2009 at Phil and Patty's house

We have no small children around so for a little fun, we decided to dress up our dog, Chaim for Haloween. As a plus, a former co-worker Rita, brought her daughter Kate to our house which further brightened out day. It was a fun day for both me and Patty and took our mind away from the serious health issues thatI face daily.

Phil and Chaim who was dressed as a postman.

Phil and Chaim who was dressed as a postman.

Patty and Chaim who was dressed as a postman.

For the first time in many years, Patty carved a Jack-O-Lantern

It helped attract a few trick-or-treaters.

Phil and Chaim who was wearing his postman's costume

Rita's daughter, Kate, was dressed as Cleopatra. SHe enjoyed both our dog and the treats she received.

Update on my options after meeting Dr. Raizer

Back from Chicago after meeting Dr. Jeffrey Raizer and hearing about some options in entering for my entry into a new clinical trial.

Option #1: A Phase2 Clinical Tria of Azixa (MPC827). This is a new, small molecule drug being developed by Myriad Pharmaceuticals. For this Phase-2 trial, total enrollment will be 68 patients with 10 at Northwestern in Chicago. Azixa’s is thought to be a microtubule destabilizing agent, causing arrest of cell division and programmed cell death, or apoptosis, in cancer cells. Azixa easily crosses the blood-brain barrier and is resistant to multi-drug resistance activity of certain tumor cells. These two features make it attractive. IV infusion Treatment is at Northwestern clinical research facility on day 1,8, and 15 of each 4 week “cycle”. Also, anbrain MRI will be taken every 4-8 weeks. Since Azixa has the potential for cardio toxicity (rare), ECGs are taken before and after each infusion along with measurement of blood troponin. Each visit to the clinic can take up to 6 hours due to the additional tests required along with the infusion.

Option #2: A Phase1/2 Clinical Trial of Cloretazine(Vion Pharma # VNP40101M) with Temodar. It’s mechanism causes it to interact with the cancer cell DNA and kill the cancer cell. Here is the typical cycle: 7 days on Temodar and then IV Cloretazine 2 hours after the last (7th dose) of Temodar over 15-30 minute infusion period. There is adequeate data suggesting that Cloretazine crosses the blood-brain barrier. If the tumor is held in check or is decreasing, than another cycle is warented. Meaning another 7 days of Temodar followed another IV dose of Cloretazine. A “cycle” lasts a total of 7 weeks. So treatments are 1 eek for each 7 weeks. An MRI is administered after the 7 week cycle yo note the effects on the tumor.


Option #3: A Phase 2 Clinical trial at Northwestern Uniyersity Medical center in Chicago. This one will use the drug Bortezomib (Velcade) prior to additional de-bulking surgery (at Northwestern) followed by more Vlcade with Temodar (Temodar). Velcade is part of a new class of drugs that act on a cellular control protein called NF-Kappa-B. These cycles are 28 days The major advantage of this option is that Velcade is already an approved drug for another type of cancer: Multiple Myeloma. But there are questions about its ability to cross the blood-brain barrier. The major disadvantage is that it requires more surgery including another craniotomy. Right now, we will let Dr. Raizer study my latest MRI scan and then have him consult with Dr. Nicholas on what they can agreepm on for my best option. Then of course, it’s up to Patty and me to make the final decision.

gOING BACk to CHicago today on a new misssion

Patty & I are GOING back to Chicago today but on a new mission. We will be staying downtown on Ontario St. tonight and then first thing tomorrow morning (8:30 AM) we will meet with Dr. Jeffrey Raizer at Northwestern University about entering a Phase-2 clinical trial using a new experimental drug. You might think that Northwestern University Medical center would be in Evanston. but it is actually located in the heart of downtown Chicago on Saint Clair St. I'll post another update after we get home.

My tumor is still progressing

We spent Tuesday and Wednesday (10/21, 10/22) in Chicago this week at the University of Chicago Medical Center. My brain MRI was on 10/21 afternoon and appointment with Dr. Nicholas was on Wednesday morning, 10/22. The results from my MRI were discouraging as the scan indicated that the tumor is still growing (since August). My next move is to try to get into another clinical trial. There appears to be an interesting one at Northwestern University under leadership of Dr. Jeffrey Raizer, MD. Dr. Nicholas believes that I should be eligible and we will contact Dr. Raizer early next week about entry into this phase-2 trial that is testing a new agent called Azixa from Myriad Pharmaceuticals. Right now and over the weekend many Neuro Oncologists are attending a conference in New Orleans. The good news is that I still feel pretty good despite the discouraging test results. Stay posted for my update next week.

David visits Indy for Sarah's Birthday

Sarah with her husband, Thomas before her birthday dinner.












Phil's son David with his Dad on Oct 17, 2009





















Patty, Phil with daughter, Sarah

David flew up from Atlanta to stay with us in Indy for his sister, Sarah's birthday weekend. It was nice seeing him and having him here for this weekend to share this time with

us and his sister. And since I'm feeling well and my mood is good, all is well. David spent Friday night with his sis and husband Thomas at the clubs in downtown Indy and we all went out to the Shalimar restaurant last night for Sarah's choice of birthday food from India.

For the love of family: Wedding of Erin & Scott in VA

Phil with his dear Aunt Carrie at the wedding reception

















Phil with his cousin Stellie and the reception

The Bride & Groom, Erin & Scott

Phil with his cousin,Carey, the bride's Father

Phil & Patty at the reception

Phil with his cousin Rob

Phil with his cousin Cynthia

For the love of family: wedding in Virginia.

I was fortunate enough to feel well enough for Patty and I to attend my cousin Carey's daughter's wedding in Virginia this past weekend. It was such an absolute joy for me to see my relatives in a time of joy. I was determined to attend this affair and although the travel and long days wore me out, I was so happy to be able to attend and see all cousins there. It was a beautiful ceremony and wonderful reception. I'm sure that you would all agree that there is nothing like the love of family and especially during these difficult times for me. I love all of them with all my heart. I was so happy that we could be a part of this event.

Tteatment Woes and my doctor's reaction

Treatment Woes and my doctor's reaction.

After almost two weeks in my new treatment regimen, I have become completely miserable from the drug, Accutane. In the photo above, you can see the extremely dry, flaking, chapped skin on my face. I also have dry eyes and chapped lips. The conditions left my skin itchy, raw, and painful, despite application of all types of lotion, facial creme and lip balm. In addition, the Accutane made me much more sensitive to the sun despite application of #100 blocking sunscreen. This made me Leary to go outdoors and so, I quit playing golf. This was not good for me as it's my only outlet for a little exercise and socialization. My appointment with Dr. Nicholas in Chicago was yesterday, 9/25. Patty told me if I didn't say something to Dr. Nicholas about this, then she would. During my exam, I also told him that my mood was depressed. We both agreed that this could be due to either the painful skin or from the drug, itself. There's really no way to sort it out. He could see that I was miserable and took me off of the drug. This leaves me on Temodar (every other week) and Avastin, twice a month). We will see how I do on this regimen after my next MRI scheduled for October 20. In the time up until then, he will help me look for a new clinical trial to enter. He has lots of expert connection in GBM clinical trials. He also told me that my skin should start feeling better within a week, or so.

Rosh Hashanah & my New Treatments Update

Rosh Hashanah & my New Treatments Update

Thanks goes to Jeff Seidenstein for the photos.
Click on each photo to enlarge then "back arrow" to return to the BLOG




Phil & Patty at the Seidensteins' on Rosh Hashanah







Thomas, Sarah and Steve at the Seidensteins' on Rosh Hashanah







Elaine and Bob at the Seidensteins' on Rosh Hashanah





Rachel, Sam, and Amy




It's now been about a week since I started my new drug treatment regime. All still seems O.K. except for the very dry skin that I now have from the Accutane treatment. Given everything else that was listed on the package insert side effect profile, I'm OK with dry skin. I've just got to remember to put lots of lotion on. I've even tried this super goo called Eucerin. It looks and feels a lot like Crisco but of course, isn't. Hey, it does the job, so I guess it's worth it. The other thing this week has been Rosh Hashanah or Jewish New Year. We went to services on Saturday and were moved, as always by the blowing of the Shofar (ram's horn). Listening to the Shofar (Tekiah) made me feel good. As is our tradition, we went to Sally & Jeff Seidenstein's for dinner with them and the Sandy's. We were happy that our children, Sarah (& husband Thomas), Amy and Steven along with Rachel and husband Sam were there with us. The dinner and time with loved friends and family was wonderful and uplifting for me.

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"

.

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.

Trip to Chicago for Avastin with family and friends

Phil's son David stayed with him this past week while his wife Patty tended to her parents in Ocala, Florida










Phil standing alongside his good friend, Terry Gladman outside the hospital in Chicago.

It was that time again: time to get another dose of Avastin in Chicago but this time in a little different scenario. My loving wife Patty is in Ocala, Florida tending to her ill father and my son, David has been with me for the past week in Indianapolis. On Friday, May 22, David and I flew up from Indy to Chicago on Southwest Airlines to Midway airport. Patty and I had done this before and it simplifies things by making it a one day ordeal. My
daughter Sarah and her husband Thomas watched our puppy, Chaim. Upon arrival at Midway, we took a cab to the University of Chicago hospital. We had some extra time before my scheduled 9:30 AM Avastin infusion was to begin so I called my good friend and flow cytometry colleague, Jule Auger for a 10 minute get-together where she could also meet David. As always, it's great seeing Julie. David and I also ran into the lead nurse on my case, Jean, and I introduced David to her. At 9:30 AM we went up to floor #6 for my infusion. David sat with me for the whole hour while the magic liquid dripped into a vein in my left arm. As before, this went without incident. Finally, at 11:30 AM David and I met up for lunch at the hospital with my good friend from my Ohio State days, Terry Gladman. We were lucky to be able to see Terry as he spends much of his time working for Novartis in Switzerland. Again, we had a fine time talking about new and old events. After an hour or so, David & I got back in a cab for the ride back to Midway Airport. We caught our flight on time and met with Sarah and Thomas at our house in Indianapolis and then went out together for a sushi dinner at Ocean World.
Best wishes to all of my friends and family. Phil Marder

Avastin working for me and others

Avastin working for me and others

We just returned from Chicago after our visit with my oncologist, Dr. Nicholas and getting a new MRI scan and an Avastin treatment.Although I hate getting the MRIs (45 minutes in a small confined area with a loud pulsing noise in the background, I realize that it is necessary to see how and if my tumor is spreading. I had the MRI taken late Thursday (5/7) afternoon. This morning we met with Dr. Nicholas. First of all he pointed out to us that Avastin had just been approved by the FDA for some recurrent GBM disease. See article here after reading this email.http://www.webmd.com/cancer/brain-cancer/news/20090506/fda-oks-avastin-for-glioblastoma
Dr. Nicholas read my MRI from yesterday and put the scan up on the computer for all of us to see. He pointed out that there was a great improvement in the scan compared to the last one I had. He said that there was a definite decrease in tumor "activity" with less swelling and spreading than had been evident before. I guess you could say that there was some shrinkage. Clearly the Avastin is working for me. Patty & I were very encouraged after today's visit.

Thanks again go to Sarah and Thomas for watching Chaim for us during our 2 day trip to Chicago. We go back for another Avastin treatment on May 22nd.

best regards to all of you,
Phil

Avastin is doing its thing

(Left) the Marders at their Passover Seder.

We just returned from Chicago from my bi-weekly Avastin infusion. I also met with my oncologist, Dr. Nicholas who did a neurological evaluation of my brain function. The good news is that the Avastin has had a very positive effect for me. It appears that my brain swelling has decreased as judged by an increase in my peripheral vision and overall affect. Dr. Nicholas was extremely positive in his evaluation of how he thinks that the Avastin is helping me. Also, the infusion this week went well and was speeded up to last only 30 minutes in total. I experienced no side effects at all during or after the infusion.



To see a complete slide show of the Marders Passover seder click HERE

Home for Passover

The Marder family all together for Passover. (Upper left to right) Thomas, David, Phil. (Lower left to right) Patty, Chaim, Sarah, and Nathan.

More puppy pix after 2nd Avastin treatment

Patty holding Chai on the back porch

Chai poses for the camera

Phil holds Chai up for his close-up

At home with our new puppy

Phil with Chai'm on his lap. This is a lap dog for sure

Patty holding Chai'm. This puppy loves to be hugged.






Our puppy, Chai'm feeling secure in a box

Back in Chicago; first dose of Avastin

ON THURSDAY, March 12, we drove back to the University of Chicago Medical center. That afternoon, I HAD AN MRI taken of my brain. After THAT, WE CHECKED INTO OUR HOTEL AND HAD DINNER BEFORE RETIRING FOR THE NIGHT. Bright and early the next (Friday) morning, we met with Dr. Nicholas. Dr. Nicholas was very positive about how he thought that the Avastin would help me. At around 11 AM, I began receiving the Avastin infusion. THis first infusion took 1.5 hours an went without incident. I had no side effects during or after the infusion. Following the infusion, we had lunch at the food court and then drove back to our home in Indianapolis.

Heading back North by car.

Our time in Florida has come to an end. We are now driving north to our home in Indianapolis. We are stopping along the wayt o visit with Patty's parents (Dick & Helen Rohde in Ocala< FL. We will also stay at a ahotel in Chatanooga TN. WE should arive in Indianapolis by Monday night, March 9th. WE will drive back to CHicago to begin the second phase of my treatments on Thursday, March 12.

Visit to Corkscrew Swamp Santuary

A photo of Phil with son David at the Corkscrew Swamp Sanctuary

Our son David is visiting us this weekend at our house in Fort Myers.


Today(Saturday, Feb28) , the three of us took a drive to the Corkscrew Swamp Santuary that is located east of Naples florida. It's a natural wetland habitat that's loaded with birds and other animals. Patty gave her new binoculars a real work out. Between the three of us we saw a snake, a frog, aligators and lots of different birds including: a Cat Bird, a yellow throated Vireo, Herons, Ibis, Egret, an Anhinga, a red shouldered hawk, and a Barred Owl.

In Florida enjoying the weather

Hello everybody.
My wife Patty and I are enjoying our "time off" at our place in Fort Myers, Florida.
The weather has been just fantastic with sun shine and temperatures in the mid to upper 70s each day. This is a big switch from Indianapolis and Chicago and it's lovely. I've been out to the driving range about 4 times and played 9 holes of golf yesterday. I am still getting tired out after these activities so I can't push myself too hard. Still, it's great to be out in the warm Florida weather.

We will start driving back to Indianapolis no later than March 6th and then back to Chicago for treatment on March 12 and 13.

- Phil

Post #26: Completion of the radiation oncology treatments

February 13 marks the end of my radiation oncology treatments. I completed all 30 treatments as they were scheduled for each weekday. After the last was completed by 2 PM, I received a “certificate” of completion and the mesh mask that I had to wear each time. I must say that I am happy to not have to wear that uncomfortable mask anymore and be done with the treatments. The end of the radiation also means that I am finished (for the time being) taking the Temodar. I will start up again with the Temodar when the Avastin infusions begin in about a month.

After the last treatment at the University of Chicago Medical center, we got in our packed-up car and drove to our home in Indy leaving the condo behind in Chicago that we hope not to have to re-visit again. When we come back for treatments in Chicago, it will be once every 2 weeks and most like require an overnight hotel stay only. Our next appointment with Dr. Nicholas has been set up for March 12 when I will have another MRI image taken of my brain to “set the new baseline” for my follow-up treatments. I will also see Dr. DeMassi during this time. My first Avastin infusion is set up for Friday, March 13th.

We are in Indianapolis for the weekend doing laundry, etc. On Monday, February 16, we will fly to our other house in Fort Myers and enjoy the warmth and sunshine of Florida for a few weeks.

Post #25: Trip back to Indy for the SuperBowl.

We decided to make one more trip back to Indy before the end of my treatments. This was the weekend for the Super Bowl, so it seemed like a good time to make the trip. We left for Indy right after my appointment on Friday, January 30th with Dr. Nicholas. So far, everything has continued to progress for me without complications. My blood count has not fallen and so the oral chemo treatments continue as scheduled. After the successful visit with Dr. Nicholas, I also had my radio-oncology treatment finishing the first 20 treatments. So, henceforth, I am on the final 10 countdown to completion.

We left Chicago at about 2 PM and pulled into our house in Indy right at 5:45 PM. Patty went to the grocery and I relaxed before we went out to dinner at the Cancun Mexican restaurant near 65th and Keystone where Rita had recommended that we try. It was busy but very good as we had hoped.

Saturday was for some relaxation and later in the day, Sarah & Thomas came over for dinner. It wasn't just an ordinary dinner. Patty prepared a Thanksgiving type special feast including Turkey, stuffing, gravy and all the fixing's. Boy was it good. I'm pretty sure that Sarah & Thomas loved as much as I did. It was great seeing them and catching up on what's new in their lives right now. Thomas, unfortunately, has been laid off his job. But, for good news, he has started his college classes at IUPUI. So, there's good news there too.

On Sunday, we went over to Sally & Jeff Seidenstein house to watch the first half of the Super Bowl. Elaine Sandy was there as well. I have to say that it was a very entertaining game that was close right to the end and I really enjoyed watching it. Thanks goes to the Seidensteins for hosting us and providing some delicious pizza as well.

After a good night sleep, we headed back to Chicago at around 10 AM on Monday, February 2. We stopped for a delicious lunch at Culver's near Lafayette, Indiana. Arriving at 2 PM, I had my Dr. Appointment with Dr. DeMassi (who lowered my dex dose down to 1 mg/day and gave me a tip on how to clear my right ear that had been getting clogged up due to the radiation treatments. He suggested holding my nose and blowing pressure into my ear. It worked!! I can now hear a lot better out of my right ear.

Post #24: The Half-Way point & visit to the Shedd Aquarium

Today marks an important milestone for me. After my radio-oncology treatment today, I have now completed exactly half of my 6 week regimen meaning that I am officially working on finishing the second half of my regimen. Fifteen down and fifteen to go before I have a complete break in my treatments for 3 full weeks. It does seem like a milestone for me. And again, so far, I am lucky to not have had had any serious side effects.

My appointment was scheduled for earlier in the day today because the radio oncology staff had afternoon meetings. So, instead of going home after the 9:45 AM appointment, Patty & I made a trip to the famous Shedd Aquarium near Soldier Field on the way home from the hospital. Patty just loves aquariums and I thought that it would be fun to do something different and would also keep my spirits up. The Shedd Aquarium is located in the large museum complex near Soldier Field. We parked our car and walked about 0.25 miles in the cold to get into the Shedd aquarium. We were at first disappointed to learn that there would be no whales, dolphins, or penguins on exhibit today. They would be gone from this museum until at least June. But, we were able to find lots of other stuff to entertain us with. There were lots of live fish and coral displays from the Caribbean and SE Asia. But the thing that was the most interesting was a 3D movie with both sound effects, wind, sprinkling water and things moving under everyone's seats. They actually called it a 4-D movie no doubt due to the included special effects. Oh yes, we also had for lunch, official Chicago loaded hot dogs that we also mighty good. It was good to get out and do something different today.

Post #23: Revised new drug matrix

Now that Dr. DeMassi has reduced my DEX dose down to 2 mg, once a day, I've revised my drug matrix to reflect the change. Here's the latest (click on image to enlarge).

Post 22: Quick to to Indy Jan 16-19

We made a quick trip back to Indy for the weekend of Jan 16-19. It was great to be back in our own home if just for a little while. The drive takes about 3 .25 hours to make so it’s not too difficult given the good weather that we had.

Saturday morning after we arrived we made a trip to our favorite German butcher shop: Claus’ on Shelby Street. There we purchase 1.5 lb of their home-smoked bacon and a bunch of their custom Bratwurst which we also love. We were
supposed to have dinner on Saturday with Thomas and Sarah sharing those brats but Thomas came up sick and we were forced to enjoy them by ourselves.
It was all TV football for me on Sunday.

Today (Monday, January 19, 2009) we drove back to Chicago. We made a stop for lunch at Martin’s Restaurant in Rensselaer, Indiana where I enjoyed a grilled cheese sandwich combo including a cup of cream of chicken soup. There’s nothing like a quaint diner in rural Indiana to bring you back to reality.

I had a 3 PM appointment for my radiotherapy and then an appointment with Dr. DeMassi. The mask was extra tight today and quite unformfortable. Clearly, I’ve gained some weight being on the steroids and it’s causing my face to puff up. Surprisingly, Dr. DeMassi has allowed me to cut my current dose in half (now 2 mg once daily) which I’m hoping will help cut down on this side effect. He did warn me to be aware of any headaches coming and if they do, he will bring the dose back up again.

Post 21: My Clinical Trial Agent: AVASTIN

(Taken from Wikipedia)

Bevacizumab (trade name Avastin, Genentech/Roche) is a monoclonal antibody agent that has specific reactivity against vascular endothelial growth factor-A (VEGF-A). It is used in the treatment of cancer, where it inhibits tumor growth by blocking the formation of new blood vessels (angiogenesis). Bevacizumab was the first clinically available angiogenesis inhibitor in the United States.

Bevacizumab is currently approved by the U.S. Food and Drug Administration for cancers that are metastatic (have spread to other parts of the body). It received its first approval in 2004 was for combination use with standard chemotherapy for metastatic colon cancer and non-small cell lung cancer. In 2008, it was approved by the FDA for use in metastatic breast cancer, a decision that generated some controversy as it went against the recommendation of its advisory panel, who objected because it only slowed tumor growth but failed to extend survival.
Clinical studies are underway in non-metastatic colon cancer, non-metastatic breast cancer, renal cell carcinoma, glioblastoma multiform (GBM), ovarian cancer, hormone-refractory prostate cancer, non-metastatic unresectable liver cancer and metastatic or unresectable locally advanced pancreatic cancer.

PS: I am currently scheduled to received my first Avastin infusion around March 5th. I'll keep you all posted on the exact schedule.

Post #20: How Deadly & Rare is GBM ?

taken From Wikipedia:

Glioblastoma multiforme (GBM) is the most common and most aggressive type of primary brain tumor, accounting for 52% of all primary brain tumor cases and 20% of all intracranial tumors. Despite being the most prevalent form of primary brain tumor, GBMs occur in only 2-3 cases per 100,000 people in Europe and North America. The standard WHO-2007 name for this brain tumor is “Glioblastoma”.

Treatment can involve chemotherapy, radiotherapy, and surgery, all of which are acknowledged as palliative measures, meaning that they do not provide a cure. Even with complete surgical resection of the tumor, combined with the best available treatment, the survival rate for GBM remains very low. However, many advances in microsurgery techniques, radiotherapy and chemotherapy are slowly increasing the survival time of patients diagnosed with glioblastoma

Post #19 : Settling into a Routine

My posts are now completely up to date.

Today is Thursday, January 15th and I have received nine radiation treatments and 11 oral chemotherapeutic (Temodar) treatments with few if any side effects. I consider myself fortunate to have not experienced side effects.

We have settled into a routine. We leave the condo at noon each weekday and arrive at the hospital around 12:35 PM giving us plenty of time to walk from the garage to the radiation oncology check-in area. My appointment each weekday is at 1:00 PM although the exact time varies somewhat. Usually, the treatments take about 15-20 minutes each day. One or two days a week they also take some extra images for Dr. DeMassi to inspect. We normally pack up and leave the hospital around 1:45 PM and get back to the condo by 2:30 PM unless we decide to do a little shopping on the way home for food or other stuff. Then it's a little rest and dinner comes up pretty soon which is usually order-in, walk to a restaurant, or Patty will cook a light meal. My Compazine goes down at 9:30 PM followed an hour later by the Temodar.

Tomorrow (Jan 16th) I will have an appointment to find out how my blood counts are holding up (hopefully OK) and we will make a short trip back to our home in Indianapolis for the weekend before returning to Chicago to start another week of treatments. This will make 2 full weeks finished with 4 more weeks to go in this initial phase. Then I should get 2-3 weeks off with no treatments at all at which time we are planning on spending 1 week or more in Fort Myers, FL.

Post #18 : Some Words about our Health Insurance Plan

Based on what we are currently going through, when you think of the benefits that you receive from your employer, put your own health plan at the top of your employer's benefit list. There has been nothing more important to us during the entire experience than how our Health Plan has stood behind us during this crises. We are insured by Anthem (Lumenos Health Reimbursement account) and their service has been beyond outstanding. The hospital and pharmaceutical bills have been through the roof and our coverage has been excellent.

The initial hospitalization at Lee County Memorial (Fort Myers) came to over $85,000 including the critical care stay and the surgery services. To my knowledge, we still have not have received the surgeons charges for my de-bulking surgery from Dr. Javedan. We ended up owing less than $1,000 out of pocket for all of this. Then, there are the drugs that I'm taking or had been switched from. Many have gone generic but many have not. The list included: Dilantin, Keppra, Dexamethasone, Ambien, Compazine, Bactrim, Pepcid, Lotrel, Zyrtec, and the chemotherapeutic, Temodar.

This last drug on that list was the most surprising (I shouldn't really be that surprised). For each charge (either hospital bill or drug charges) Anthem sends a paper statement indicating how much the standard prices are and how much that they are willing to pay based on their contract with the suppliers. The shocker was that for a 45 day supply of Temodar (pills) the stock price was -$13,000. Hard to believe but it's true. We are guarding these pills like they are gold. Our out-of-pocket expense for the 45 day supply pills came to $0.00.
So from this, you can see how valuable our health insurance plan has been to us.

I cannot say enough in how appreciative that we are for this benefit nor imagine what others go through without such coverage.

Post #17: Living the Urban Lifestyle

My wife Patty and I have lived a “suburban” lifestyle for our entire lives. This involves living in a single family house, driving to restaurants and grocery stores and not walking a lot except for planned exercise or hikes. Now that we are living in a downtown condo, our lives have changed dramatically as we now are living the “Urban” lifestyle. So now, we reside in a high-rise building (21 floors) and live in a small apartment. Food shopping (grocery) and drug stores (CVS, etc.), and of course restaurants are within walking distance and that's how we get to most places. Of course, you have to plan around the weather here in Chicago, bundling up when necessary. But, it's OK with us; it's just very different from what we are used to. We also have a 24 hour doorman who is nice and helpful for us in finding places around the neighborhood and negotiating tasks in the apartment building. Another thing that is interesting is that nearly every restaurant offers delivery services so if the weather is extremely bad, they can just bring it directly to your apartment (right upstairs if you tell the doorman that it's coming).

It helps in Chicago to have a reserved, indoor parking space as well that is attached to the apartment house. When we drive to the hospital each day, we really don't have to go outside at all and that's fine with us when the wind chill is below zero.

Finally, if you look out the window from our apartment, you can see probably 20,000 other windows where others are doing the same. I told Patty that when I do this, it reminds me of the famous Alfred Hitchcock movie staring Jimmy Stewart call “Rear Window”. So far, I haven't seen any potential crimes taking place and I haven't gotten a telescope as Stewart did in the movie. And that's a good thing.

Post 16: First Day of Follow-up Treatments

After having my stomach feel pretty bad for most of the weekend, I went into the start of my follow-up treatments with a little trepidation.

We had an early lunch at the condo at 11 AM on Monday, Jan. 5th and drove down to the hospital and parked. From there, we headed to the radiation oncology department and while Patty waited in the waiting room, I went back for my treatment. I had to remove only my shirt and put on a hospital gown for my top. I lied down on the padded bench of the CT scanner/focused radiation combined instrument and tried to relax as the technicians positioned my head on the customized cradle and then tightly affixed the masked to my face. This is not a comfortable position to be in and if you have any inclination toward claustrophobia, you would have to take a Valium each time. Prior to getting in this position the technicians helped me get my IPOD running so I could hear my music.

The entire treatment procedure takes around 15 minutes as they position both me and the instrument to focus the beam on the seven spots in my brain that they want to hit. If I relax and focus on the music, it's really not that bad. Two time a week they also take additional images while I'm in this position that Dr. DeMassi looks at for correct positioning. That takes another 15 min. But, all-in-all, it's really not that bad.

Before leaving, we spoke briefly to Dr. DeMassi who indicated to us that everything looked good to him.

We then left the hospital and drove back to the condo where we relaxed for the rest of the day. This Monday night was also to be the start of my oral chemo treatments. I was apprehensive about that too, given my stomach issues over the weekend. We had our dinner and when 9:30 PM came up, it was time for my Compazine pill. This went down fine. Then, at 10:30 PM, it was time for my Temodar pills. I had everything ready by my bed including another Compazine tablet, some Pepcid, and a towel in case I got sick. But, low and behold, I experienced no problems at all and did not have even the slightest bit of stomach upset.

In summary, the first day of treatments went without any incident and that's the way that it's been for each day since. Obviously, we are quite pleased with the way that this is playing out.

Post #15: The Ravages of Dexamethasone

Post #15: The Ravages of Dexamethasone

from Wikipedia.org:

Dexamethasone (DEX, brand name Decadron) is a potent synthetic member of the glucocorticoid class of steroid hormones. It acts as an anti-inflammatory and immunosuppressant. Its potency is about 20-30 times that of hydrocortisone and 4-5 times of prednisone.

This was one of the first drugs that I was put on after entering Lee County Memorial Hospital in Fort Myers. Mostly, I was put on it to relieve brain swelling, edema, and the symptoms that generates prior, during and after the de-bulking surgery that I had. Dr. Javedan put me on 6 mg/3 times a day (TID), which is a fairly hefty dose. I know that I needed it but the side effects began almost immediately. They included: hungry and thirsty all the time, restlessness, inability to sleep, constipation, dizziness, and stomach upset (that's why I'm taking a lot of Pepcid). Basically, it speeds up your metabolism completely. It's hard to relax when you are on this drug.

It's a brutal drug to be on because of this. A more subtle yet obvious effect is on mood and emotion. I consider myself and fairly “non-emotional” type of person. But while taking DEX, I find that I cry easily. I even watched a “chick-flick” and teared my way through it. You know, it's the new, “emotional” Phil Marder. After extended use, which I'm also experiencing, it can cause lack of wound healing (those blood sticks for the lab test cause leak and leave bruising on my arm), excessive hair growth (heavy beard) and puffiness in my face, development of a “pot belly” and leg/hand/foot cramps.

It didn't take very long after meeting the doctors in Chicago before they lowered my Dex dose down from 6mg x 3 times/daily (TID) to 4 mg 3 times/daily (TID). Eventually, they reduced it to 2 mg/twice daily (BID) or a total of 4 mg/day. This reduction has helped me a great deal to this point. The radio-oncologist, Dr. DeMassi , has told me that's as low as it will go because of potential brain swelling from the focused beam irradiation treatments.

So, when Dr. Nicholas' team lowered my dose to 2 mg BID, I thought that I would immediately feel much better. But, this was not the case. The rapid decline in dose caused me to “hit the wall” with severe exhaustion and worse yet, a complete shut-down of my GI digestive system. On Saturday, Jan 3rd, I was a total mess being tired and nauseous. My breakfast and lunch just sat in my stomach and never moved. Knowing that my irradiation and oral chemo was to begin on Monday, January 5, I was quite concerned. But, fortunately, on Sunday I felt much better and by Monday, January 5, I was fine and ready to start the new regime.

Post #14 Jan 1-2: into the condo & into the trial

We drove up to Chicago with a fully loaded down car and moved into our condo on January 1. There, we met by one of the condo owner, Jim Sosnoski who helped me set up our computers and television that we brought up to Indy. This was very helpful as you might imagine. I would be totally lost and useless in the condo without access to both technologies. Jim also showed us around the neighborhood explaining the surrounding restaurants and the delivery services that they provide. After driving us around the neighborhood he dropped us off and we had an early dinner at a wonderful Thai restaurant that is three blocks from our place. Then it was back to the condo to get a good night sleep before our trip to the hospital the next morning Friday, January 2nd.

The next morning, Jan. 2nd, we drove from our covered parking spot at the condo to the hospital parking and went directly to the labs where my liver enzymes were to be tested again. In about an hour, we went up to see Jean, our nurse coordinator, who happily told us that my numbers were down in the 50s so that I was officially accepted into the clinical trial. What a relief that was to hear. They also lowered my DEX dose down to 2 mg/ twice daily (BID). We went out to an Italian restaurant to celebrate later that evening.