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Jim's Journal   (Return to journal entry listing)
Posting Date: Tuesday, October 9, 2007
Subject: New Treatment Advice

My Friends,

There is no good time for this to happen, but days before the Ride For the Roses is a real drag. The Temodar protocol has failed. Yesterday's MRI revealed both increased low grade growth (or mass effect) and high grade growth (enhancement). It has also now entered the temporal lobe from the primary site in the parietal lobe. I have just returned from the oncologist with three options:

1. Avastin
2. SAHA
3. PCV (probably without the V)

What I know:

I am going to get a second opinion, probably from the Mayo, but possibly from MD Anderson. My doc says since I have a chronic recurring tumor I will probably do them all at some point the question is order. SAHA might not be covered by insurance for me right now which is a big consideration. It may be the one with the least side effects. Avastin sounds like a good choice but has an increased risk of internal bleeding, which is probably not good anywhere but extra bad in the brain. PCV is the hardest to take, with or without Vincristine.

Another possibility:

Dastinib. This is a newer drug similar to Gleevec which I took successfully for a year and has the fewest side effects of the group. But I may not be able to get it and might not have enough proof of efficacy yet to take a chance on it. I need something to work right away.

I do not want this to weigh heavy on the celebration this weekend and am still planning on being there. I especially do not want it to Max to have to worry about this. He has been through a lot this past year. He is my partner for the weekend. My brother John & his son Joe are also coming.

If anyone has any experience with these please let me know. Thank you all for your support. Looking forward to seeing you all!