Thanksgiving, birthday, Ohio, Temodar & leukemia

Today is my birthday which is also Thanksgiving this year. As usual, we are at my dad and step-mom's place in Lakewood, Ohio for most of the week. My brother Ben, his girlfriend Kate, and my step-sister Claudia are also here, filling, as best we can, their large house.

This last round of chemo went surprisingly smoothly as did the business trip to California. I'm working a lot less this week of course, especially since I can't connect to the Cisco VPN from my Dad's house. I'm using his AOL browser to make this entry and it's a strange experience for me.

On Monday, I had a consultation with Dr. Jon Glass of the Fox Chase Cancer Center in Philadelphia. I expected him to agree that my treatment was the standard of care and either I should stick with the 12 months or perhaps go for 18 months or two years. Unfortunately, what he said surprised me. He suggested that I consider stopping the Temodar immediately because there's evidence that those who take Temodar can end up getting ALL (Acute Lymphocytic Leukemia). This is the same leukemia I had 20 years ago, which was treated partially with the full brain radiation that probably caused the tumor I'm taking the Temodar for. It's a bizarre Catch-22 style circle of deadly cause and effect.

I had heard some talk of the Temodar-leukemia connection before but had put that off to 'the future'. I hadn't calculated in the fact that Temodar has only been in use for about 7 years, which means, well, the threat of that is closer than I'd thought. I don't think there's numbers associated with this risk, probably only anecdotal evidence and I don't know how seriously to take it. Dr. Glass's suggestion was that I might be at an elevated risk because of my history with the disease, but he didn't have much else to offer me except to 'watch and wait' or to try massive doses of Tamoxifen, a breast cancer drug that has shown some promise with brain tumors. This doesn't sound very good either.

So this information is on the back burner for me during our vacation. I'm waiting until we get home to do more research and contact my treatment 'team' about these ideas. Today, I will enjoy the chilly, sunny day, the food, and my family.