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.
Saturday, December 5, 2009
Azixa Update and THanksgiving 2009
Saturday, November 14, 2009
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
Sunday, November 1, 2009
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.
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.
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.
Thursday, October 29, 2009
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.
Thursday, October 22, 2009
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.
Sunday, October 18, 2009
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
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.
Monday, October 5, 2009
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 Stellie and the reception
The Bride & Groom, Erin & Scott
Phil with his cousin,Carey, the bride's Father
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.
Saturday, September 26, 2009
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.
Sunday, September 20, 2009
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.
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.
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