23 August 2007
Thursday, 11:55 PM
High-Level Journal Summary: Preparing a personal "Health Status Report" for my 8/24/07 meeting with Dr. Fine and his team at NIH. I realized that this is something I could prepare so that we can spend less time reporting to one another and more time talking about what it all means.
In this online journal entry, I summarized a list of medical events since early July. As well, I collected a dozen medical questions that I want to review with either a CRNP or Dr. Fine himself. This is a very healthy list of discussion points that took a full two months to assemble.
While having this status report is a way to control what I can control, I fully realize that the main goal is to listen to what Dr. Fine has to say after reviewing my latest MRI. The best outcome on that front would be continued progress using Temodar chemotherapy.
I can only hope that the impact of Temodar chemotherapy continues for a long time and hits a plateau as far in the future as possible. In 24 hours, we will have the most recent assessment in this regard.
Countdowns:
1.) Day 18 of 28 in my 24th 5/23 Temodar chemotherapy cycle.
2.) Meet with Dr. Howard Fine on 8/24/07 at 9 AM to review my 8/20/07 Perfusion MRI.
2007 Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was yesterday.
2.) In 2007, I have had 37 SPS's in 235 days. This is an average of 1 SPS every 6.3 days.
Actual Journal: In my 8/2/07 online journal entry, I came to the conclusion that it would be much more efficient if I came to each of my bi-monthly meetings at the National Institutes of Health/National Cancer Institute/Neuro-Oncology Branch (NIH/NCI/NOB) with a personal "Health Status Report" in my hands. I realized that this is something I could prepare so that we can spend less time reporting to one another and more time talking about what it all means. I did not forget about this. So, the purpose of this online journal entry is simply to:
1.) Report all that has happened in the past two months, and
2.) List the different topics that I would like to discuss.
Medical events since last time
In no order, here are the medical events that I need to share with the CRNP, who will be Nancy Garren, Megan Sosa, or Irene Stroud. (Cheryl Royce is on vacation this week). In no order:
1.) We last met on 7/6/07.
2.) I am now 41 years old, so this needs to be noted in my overall report.
3.) I have had 7 Simple Partial Seizures (SPS's) since our 7/6/07 visit. Descriptions are as follows:
7/21/07. It was a light SPS that lasted 30 seconds. It happened at 7 PM after I had been walking for 45 minutes of my 1.5 hour walk. It was localized in my head and I did not feel any effects in my limbs. No Ativan emergency anti-seizure medication was needed.
8/3/07. I had a very strange aura after I ate yogurt at 6:45 AM. It was definitely an aura, but it lasted for 10 minutes and caused my head to mildly ache all over and my tongue to taste somewhat metallic. I have never had such a reaction to yogurt, so I attribute this to a different type of aura than I have ever experienced to date. Even though it lasted for longer than 60 seconds, I did not take any Ativan emergency anti-seizure medication. It was medium in nature and did not seem like it was heading a certain direction to warrant Ativan (simply based on my intuition and experience with seizures to date). For now, I will call it an SPS.
8/9/07. It happened at 12:20 AM, after I had been sleeping for almost two hours. It was a heavy SPS that bolted me from bed and caused me to run to the bathroom and breathe very hard. My friend Nadia came from the other room to check on me and make sure I was okay, so I had woken her, too. That's how much noise I was making as I instinctively tried to chase away this SPS with guttural sounds (which just happens...it is not something I try to do). No Ativan emergency anti-seizure medication was needed. I am fairly certain that this happened, once again, due to hyponatremia (a low sodium level) that typically happens when I am fasting. This is a known issue that is medically tolerated while I fast during chemo week.
8/18/07. At 8:30 AM, I had a medium-strength aura that lasted for 30 seconds and self-resolved. No Ativan emergency anti-seizure medication was needed.
8/18/07. At 7:30 PM, after climbing a steep hill at the tail end of a 1.25 hour walk, I had another SPS. I had measured my heart rate at about 140 beats per minute after I quickly climbed that hill. This SPS was a quick flash that lasted for only about 1-2 seconds, but it was very sharp. The SPS was contained in my head only and did not involve any sensation in other parts of my body. Once again, no Ativan was needed.
8/22/07. This SPS was at 7:15 PM, was medium in nature, was contained only in my head, and lasted for 1-2 seconds.
8/22/07. This second SPS of the day was at 7:45 PM, was a bit sharper (but still medium in strength), originated in my legs and rushed to the top of my scalp, lasting for 1 second. The odd thing about this second SPS is that it happened when I was walking DOWN a hill. I usually have SPS's when my heart is racing from being in physically stressful situations. Afterwards, I ate a lot of chips to get more sodium into my body. I have not been very good about doing this lately, so I suspect I was hyponatremic. I also think I have been pushing myself too hard in a number of areas, which increases my stress level and also leads to SPS's.
4.) Other events related to chemotherapy:
7/12/07. I saw stars in the corners of my eyes for a full 20 seconds when I sat down for lunch. This is often (but not always) a precursor to an SPS.
7/12/07. At 11:00 PM, I felt sharp nausea when I went to bed. I stood up and breathed deeply. As a result, there was no emesis (i.e., I did not throw up).
7/14/07. I woke with a red rash on my face -- around my eyes, nose, ears, and neck.
I titrated Colace during the last two chemo cycles and have not been constipated. I have increased my hydration and fiber intake when I titrated Colace, and this worked very well to compensate.
Agenda
My list of things to discuss this time around is long. I hope that my CRNP can address many of these issues, but there are several I want to discuss head-on with Dr. Fine when we meet. In no order:
1.) I had burning eyes on 7/8/07 due to laundry detergent used on my bed sheets. This was a first in my lifetime.
2.) Ask again about submitting samples of my brain tumor that are now in paraffin so that DNA can be extracted. The IRB (Internal Review Board) at NIH should have approved this procedure by now. How will this be done? What is the process? Per my 8/6/07 online journal, I will have my brain tumor samples IN HAND when I arrive. I am happy to give this information to Dr. Fine ON THE SPOT!
3.) Per my 7/21/07 online journal entry, ask about the genomic database and computer modeling of brain cancer cells, which sound complimentary. How well integrated are these efforts? The background behind this topic is as follows:
A special report from NCI called "The Mathematics of Cancer." This report speaks in scientific detail about predictive computer modeling for better understanding tumor growth. The purpose of this technique is to better drive individual therapies at some point in the future.
While this computer modeling looks to be in relatively early stages of development, this seems to fit nicely with the genomic understanding of brain tumors that Dr. Howard A. Fine is leading at NCI.
Suffice it to say that having a chromosomal understanding of brain tumors AND a technology that is able to model how cancer cells might behave would be a powerful combination. As a patient and not a scientist, that sounds like the kind of one-two punch that can help make significant advances in the treatment of brain tumors.
4.) Per my 8/1/07 online journal entry, start asking questions about why the skin around my eyes turns red periodically. Is there any link between this and Nephrogenic Systemic Fibrosis (NSF)? My phlebotomy tests on my kidney should answer that question very quickly, though. The background for this is as follows:
The complex reasons from the FDA behind a simple letter from NIH regarding MRI's. There is a new process in place at NIH which requires patients to get blood work done prior to an MRI to essentially check their kidney function.
The reason for this? There is a new link between contrast agents used during an MRI and something called Nephrogenic Systemic Fibrosis or Nephrogenic Fibrosing Dermopathy (NSF/NFD). My contrast agent for Perfusion MRI's at NIH is called Magnevist, which is a contrast agent that is part of this FDA "Public Health Advisory."
5.) Per my 8/7/07 online journal entry, I want to know why Dr. Fine thinks I have a grade II astrocytoma and not a glioneurocytoma (per Dr. Douglas C. Miller at NYU). I am guessing that it is because Dr. Fine wants to communicate in compliance with WHO standards.
6.) Multiple pathology reports said that it was tough to determine if my tumor is a pure astrocytoma or an oligodendroglioma. I wonder if is difficult to categorize brain tumors like this. Does this happen often? Or, was my brain tumor an unusual case? Will having a genomic database help to better understand brain tumors and eventually eliminate issues like this?
7.) When I had abnormally high White Blood Count on 1/8/06 (5.66), I had an abnormally low HCT (31.9%). Does this mean that WBC Counts and HCT Levels are inversely correlated? If so, why?
8.) What needs to be done when my HCT is at a critically low level? Is medical intervention needed at this point?
9.) Per my 8/21/07 online journal entry, should I have a 1.5T or 3T MRI? Confirm. (I had a 1.5T MRI on 8/20/07.)
10.) Per the message from Moia on 8/20/07, there have been patients taking Temodar who have developed a particular type of pneumonia (Pneumocystis Carinii). It is often recommended that these patients are given preventative Bactrim (an antibiotic) while on Temodar chemotherapy. What should I know about this issue?
11.) Per my 8/8/07 online journal entry, I did not see Dr. Friedman for a follow-up since my only goals were a second opinion and to get into the Duke Medical Center's database. I want to visit Dr. Friedman on a consultative basis for now, just as with Dr. David Schiff at UVA.
12.) Per the message from Pat on 8/21/07, a Mediportฎ is an indwelling catheter access port that eliminates the need of being at the mercy of phlebotomists' abilities to access a vein. It will also prevent the future collapse of veins in the arm due to frequent accession for chemo, blood draws, etc. Is this a realistic option for me?
Final thoughts
In the end, the number one thing to do is to LISTEN to Dr. Fine and hear his analysis of my 8/20/07 Perfusion MRI results. That is the stuff that is most critical...and least out of my control.
My hope is that the co-registered MRI's comparing August 2007 to one year ago continues to show impressive results. I understand that the "shrinkage" of my brain tumor will plateau at some point in time. However, I want that to be as far in the future as possible. Ideally, we can keep this tumor "on the run" for as long as possible. If we can continue this trend yet another two months, I would be thrilled. That would be a great outcome from our Friday meeting.
In the meantime, I feel prepared to learn as much as possible during this time with a great medical team at NIH/NCI/NOB. Being prepared and studying is the stuff within my control, and I am grabbing onto it with all I've got. I never want to lose sight of that. Ever!
