14 October 2008
Tuesday, 9:40 PM
High-Level Journal Summary: Getting back from Florida and immediately diving into my overall National Institutes of Health (NIH) data ASAP. They had this past Monday off, just like we did. As such, this was the first day to be in touch with them and get new data from our visit last week.
There is an opportunity to visit them on 10/15/08, but hopefully that will not happen. We just hope that we can leave open issues alone for the next 2 weeks. If we can do that, then we have bought that much more time in this clinical trial.
Of course, this is taking the worst course possibility so far in this overall clinical trial. Can we take a nicer path at some point in this overall clinical trial for a while?
Countdowns:
1.) Day 5 of 28 in Cycle 2 of the Avastin + Enzastaurin Clinical Trial at the National Institutes of Health (NIH).
2.) Possible meeting with the National Cancer Institute (NCI) on 10/15/08, all depending upon the PET Scan results from last week.
2008 Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was 32 days ago.
2.) In 2008, I have had 80 SPS's in 288 days. This is an average of 1 SPS every 3.6 days, exactly.
Actual Journal: I am back in Virginia again. I think I stayed away for an appropriate amount of time, to the point I was ready to get home again. It was not too short, it was not too long. I've got a good stack of USPS mail in front of me at home, but all that can be resolved in an appropriate amount of time this week.
On my plate
My Mom and I landed at Reagan National Airport at about 2 PM. We immediately got into phone calls with the National Institutes of Health (NIH), who has been studying my PET Scans since we last met on 10/10/08. We all figured that would have some solid information by this time on Tuesday, mainly because they are closed on Monday (Columbus' Day). I definitely got some great information.
Dr. Fine went back to his perspective from 10/10/08, saying that he is "cautiously optimistic" at this point in time. There is no stable information that can be provided right now. Certain information can mean the same thing, all depending upon how it is read. This is quite encouraging, especially since of the cost of doing this externally is so high compared to doing this based upon a clinical trial.
In the end, it is all quite confusing. I have a great ways to go before I understand what is going on right now and why certain things are happening the way they are. Once I get a firm grasp on this information, I will be in much better shape. Until then, I feel pretty much without a grip. If I read the clinical trial 8-pager, we would probably be closer to being on the same page again.
Once on my plate
I have decided that I need to get all this information back on my plate within the next 2 weeks. That is when I am visiting with my CRNP Cheryl Royce. If there are issues that are outstanding and need attention, I should be ready to talk with her ASAP. I need her attention, to the point that I do not need to be taught from the ground up.
Given the past 3.5 years, I do predict success in this. I must come in quite prepared, though. That means a lot of work.
Okay -- put on my sneakers, prepare to work hard, and generate questions that may follow. I've got data from last week, and this week is all about what to do with this data. If I do not have answers by the end of next week, I may have to question my overall approach.
