25 July 2007
Wednesday, 11:55 PM
High-Level Journal Summary: Notes from my meeting today with my local oncologist, Dr. Dipti Patel. We covered the following topics:
• Getting a green light for my 24th cycle of chemo.
• Learning a little about multifocality of seizure focus where seizures essentially originate in different parts of the brain.
• Scheduling Temodar when I change time zones midway through my next chemo cycle.
• Learning that Dr. Patel is also tracking my Hematocrit count in my bi-weekly Hematology Report.
• Getting ~ $5,000 of Temodar for $40.
The quality of our meeting today was underscored by Dr. Patel's professionalism. When she walked into the room, she already knew where I was medically and what we should do next. All it took was a physical exam to confirm her opinions. In addition, she took the time I needed to get through my questions. Dr. Patel certainly sets a high standard for other medical professionals to live up to.
Countdowns:
1.) Day 17 of 28 in my 23rd 5/23 Temodar chemotherapy cycle. My body claimed what it needed today. I slept a whopping 3.5 hours this afternoon. Wow. I suppose I should not be too surprised since I woke last night at 4:30 AM wrestling with various medical issues I need to tackle and how to go about doing so.
2.) Interview on WTOP Radio (AM 1050) on 7/28/07. This show will be at 9 AM (ET) and will help feature how companies have chosen to become involved in supporting 38 Lemon and its efforts to promote brain cancer awareness from a patient's perspective. (More details to come.)
2007 Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was 4 days ago.
2.) In 2007, I have had 31 SPS's in 206 days. This is an average of 1 SPS every 6.6 days.
Website Updates:
An online journal was added today for 12/25/04. This online journal sort of amazes me, in retrospect. I was definitely being very task-oriented in things that "needed to be done" after my brain biopsy. If I were in the exact same situation today, I would just drop many of these tasks so that health could truly come first. (It took me a while to get to that point.) This is a transcription of my handwritten journal from that day.
Actual Journal: I had my meeting today with my local oncologist, Dr. Dipti Patel. We covered my entire agenda that I posted on 7/24/07. Here are my notes from today's meeting.
1.) Review my 7/22/07 Hematology Report.
No major issues. The sure sign of a doctor who comes into a meeting prepared, Dr. Patel had already reviewed my new medical reports in advance and had her opinion BEFORE she walked into the room. I have so much respect for this kind of professional care. Because I experience this with Dr. Patel, I project these standards upon every medical professional with whom I interact. It is a very high standard...but completely reasonable, at the same time.
2.) Confirm that I can proceed with my 24th chemo cycle on 8/6/07.
Yes, moving forward with my 24th chemo cycle is a green light. I told Dr. Patel that Dr. Fine and I had initial conversations about taking Temodar chemotherapy for longer than 2 years (see notes about this in my 7/7/07 online journal entry). After discussion about the reasoning for this, Dr. Patel agreed that in my situation, this is correct thinking.
Dr. Patel also added that even AFTER the effectiveness of my chemotherapy seems to reach a "plateau" (as indicated in the Perfusion MRI), it would probably be good to go several more chemo cycles, assuming that my blood numbers allow. This makes sense to me since the visible brain tumor mass revealed in a Perfusion MRI only reveals brain cancer cells at a very high level. My understanding is that what actually shows up on an MRI is only a high-level indication of what is really happening at a molecular level. From what I know about MRI's, that almost makes intuitive sense.
3.) Bring most current NIH Reports for Dr. Patel for review.
Dr. Patel gave an eager "yes" when I asked if she wanted copies of my NIH radiology and neuro-oncology reports. She reads these in detail whenever she can get her hands on them. This is my cue to PERSONALLY ensure that she ALWAYS has copies of the most recent reports.
4.) Per my 7/20/07 online journal entry, ask if there one central location where seizures originate. Or, can they originate from multiple locations in the brain?
I need to do much more research about this, but Dr. Patel was able to point me in the right direction. She told me that there are focal seizures where seizures originate from a single place within the brain. As well, there can be multifocality of seizure focus where seizures essentially originate from multiple places within the brain. Dr. Patel said that I am much more likely to have multifocality because neurons were cut during brain surgery and since I have a large brain tumor. This will be interesting and helpful to study this and get some mastery of multifocality.
5.) What do I do in my 24th chemo cycle when I change from Eastern Time to Pacific Time midway through the chemo cycle? How should I handle this change in time zones?
Dr. Patel assured me that taking chemotherapy with a few hours of variance will not make a difference in the overall effectiveness. Still, I pushed on this subject, simply because I want to minimize the variables in my overall treatment, down to the nth degree. As such, Dr. Patel said that while I am on the East Coast, I can start fasting at 9:30 PM (ET) and then take Temodar at 9:30 AM (ET). When I travel to California midway through the cycle, I can just switch to fasting at 6:30 PM (PT) and taking Temodar at 6:30 AM (PT). That way, I still have the same time intervals between drug consumption throughout the week. I like this answer and it feels right to me (which is probably the most important part of this solution).
6.) What are the high, low, and critical levels for Lymphocytes and Red Blood Cells?
Dr. Patel said that given my age, my overall physical condition, and my blood numbers to date, she is not worried about my Lymphocyte counts or my Red Blood Cell counts. Instead, she is paying particular attention to everything I am already paying attention to (White Blood Cell, Neutrophils, and Platelet counts) PLUS my Hematocrit counts (otherwise known as "HCT"). Given this input from Dr. Patel, I will now go back and capture all this HCT data and see how it has been trending since the start of chemotherapy on 10/31/05.
7.) Get Temodar chemotherapy medication prescriptions and get them fulfilled at Prosperity Pharmacy.
When Dr. Patel walked into the room to greet me, she already had the prescriptions written and handed them to me directly. In other words, she had already reviewed my medical records and decided beforehand that I was good to go for another round of chemo. Now, the drugs are in my kitchen cabinets at this very moment.
Oddly, my co-pay for Temodar was reduced from $400 to $40 for most of 2007. I questioned my pharmacist about this and asked if it should be more than this. I was assured that the co-pay amount is correct, which suggests that I have hit some ceiling in what I should be paying today (according to my medical insurance policy). I'm happy to pay less, but paying $40 for a batch of drugs that reportedly has a "street value" of about $5,000 just seems bizarre.
Time for bed
Good day. It was consumed with this bi-monthly oncology meeting, rest, exercise, scheduling future medical meetings, exchanging e-mails with a number of doctors about various medical issues, etc. Just a good day. I should sleep much better tonight than last.
