Saturday, 9:50 PM
High-Level Journal Summary: A thorough review of all seizure data for 2008, including a graph-based summary of this data. This will be enough for Dr. Pacia to make the decision he wants to make at this time. That is, it will help to make a decision about the possible reduction in anti-seizure medications.
I want to get this decision made this week, because a possible extension to Cycle 7 and Cycle 8 of Carboplatin + VP-16 chemotherapy may make this a questionable thing to do. Dr. Fine (neuro-oncologist) may request that Dr. Pacia (epileptologist) wait until these chemotherapy body stresses are completed before changing any other medications.
I can see this question arising -- mainly because I will bring it up if they do not. This will be an interesting question to nail down in the coming week.
Countdowns:
1.) Day 19 of 28 in Cycle 6 of Carboplatin + VP-16 chemotherapy. This quiet weekend is so worthwhile. Plenty of sleep, exercise, good food, paying of bills, and peace.
2008 Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was 6 days ago.
2.) In 2008, I have had 76 SPS's in 229 days. This is an average of 1 SPS every 3.0 days.
Actual Journal: I need to prepare some completed data for Dr. Steven V. Pacia, my primary epileptologist in New York City. When I last met with him on 7/9/08, he said he wanted my Simple Partial Seizure (SPS) counts for all of 2008 in 5-6 weeks.
Dr. Pacia wants to see the patterns. From there, he will make a decision about my anti-seizure medications. If circumstances allow, he may reduce the amount of Trileptal anti-seizure medication I take by 150 mg.
The data
What better way to communicate clearly with Dr. Pacia (and my local neurologist, Dr. Amy Stone) than to create a journal entry with all this data and send it via e-mail. It will get to the right people quickly to keep us all on the same page. Electronic medicine between patient and doctor. It's about time for this in the 21st century, isn't it?
Here is expanded data from my 8/9/08 online journal entry, along with a graph of this data.
1.) SPS's in January 2008: 22
2.) SPS's in February 2008: 10
3.) SPS's in March 2008: 11
4.) SPS's in April 2008: 14
5.) SPS's in May 2008: 6
6.) SPS's in June 2008: 5
7.) SPS's in July 2008: 3
8.) SPS's in August 2008 (so far): 1
9.) Average rate of SPS's in 1Q08 (January, February, March): 1 every 2.1 days.
10.) Average rate of SPS's in 2Q08 (April, May, June): 1 every 3.6 days.
11.) Average rate of SPS's in 3Q08 (July to date): 1 every 11.8 days.
12.) Average SPS rate in all of 2008: 1 every 3.0 days.
Chart of SPS's in 2008
Here is a chart of the above number of SPS's per month. Perhaps this makes the point more emphatically about the overall trending this year.
Conclusions from this data
I am an amateur in reading all the medical data I receive, but I have a good sense that Dr. Pacia will being reducing the amount of anti-seizure medication I am currently taking. I'll fire off this data to him this week and see what he has to say.
I don't think I could be more on top of his request and this data than this. This should be everything he needs in order to make a base decision about my current seizure medication. This will be interesting to watch. Hopefully, I will get a conclusion before meeting with my neuro-oncologist Dr. Howard A. Fine this week. It will be one more important piece of information for him as we potentially go into Cycle 7 and Cycle 8 of Carboplatin + VP-16.
Who knows, Dr. Fine may want to wait until after the chemotherapy ends before trying something like a reduction in other medications which are now stable.
