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.