9 January 2007
Tuesday, 11:20 PM
High-Level Journal Summary: Back from vacation, my day become consumed by brain cancer activities, from a support group meeting to a neurology appointment to a phone interview (for the 2/27/07 FDLI colloquium) to medical bills. Important details about the following are presented in this journal entry:
1.) Anectodal evidence that ZD6474 is working to stabilize glioblastomas.
2.) The best time to meet with my neurologist is when I am drowsy.
3.) Regarding "expanded access to unapproved drugs," what I would do if a.) all standard protocols of treatment AND b.) all available clinical trials were exhausted during the treatment of my brain cancer? What would I do then?
Unlike my time when on vacation, this day flew by in a flash. I am definitely immersed once again, which is okay. I believe in attacking all such matters with a full head of steam (so to speak).
Countdowns:
1.) Day 16 of 28 in my 16th 5/23 Temodar chemotherapy cycle.
2.) Monthly meeting with my local oncologist, Dr. Dipti Patel, on 1/10/07. The purpose of this meeting is to review my latest Hematology Report and see how I am progressing in my 16th cycle of Temodar chemotherapy.
2007 Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was 3 days ago.
2.) In 2007, I have had 1 SPS so far.
Actual Journal: Boy, it was like "returning to the office after vacation" today. Some people have this impression that being on Long-Term Disability to deal with brain cancer equates to lots and lots of free time. When I hear such things, I don't get upset anymore. More, I just chuckle to myself. To be quite blunt, it is an uninformed impression. That aside, here are some of the important updates from activities today:
1.) Inova Brain Tumor Support Group Meeting
A long-standing member of the group, Kristy, continues to do very well on the ZD6474 Phase II Clinical Trial at NIH. This is significant. Kristy has a GBM (glioblastoma, or grade IV astrocytoma) that was once the size of an orange. When it was surgically resected, it grew back again to the size of an orange in just about 3 months. (That shows what "fast-growing" really means.) Since surgical resection, radiation, and chemotherapy did not stop this GBM, Kristy went on a Phase II Clinical Trial for ZD6474. This is being conducted at NIH.
The basic concept behind ZD6474 is that it goes after brain cancer cells at a genetic level. In my own words, ZD6474 has the ability to recognize the brain cancer cells at a genetic level so as to better stabilize them.
In any case, it is tremendously exciting to see Kristy getting these results -- not only because we love her as a person, but also because she in the ONLY person in the group who is in this ZD6474 trial. She is the "walking data point" who gives us real-time feedback each month. Yes, this solitary feedback is anecdotal, but it is still pretty powerful feedback given the aggressiveness of her brain tumor. One huge "WOW!"
2.) Neurology Meeting
My meeting with my local neurologist, Dr. Amy Stone, was perfectly timed. I met with her at 1:30 PM, just when I was getting drowsy. This is when I normally take my afternoon nap. So, she got some authentic feedback about how I do when I am tired. I actually prefer to have things presented in this way. It is more realistic. When I meet with Dr. Stone at 9 AM, she gets to see me at my best and it is harder for her to get information that garners better feedback. By meeting with her when I am fatigued, it helps her to see things more clearly. I will continue to schedule meetings with this strategy in mind.
Other than the above point, the meeting was almost routine. Dr. Stone is pleased with my overall progress. Per my 12/26/06 online journal entry, my "seizure statistics" were helpful for her.
- Last Grand Mal Seizure: 6/29/05
- Last Focal/Motor Seizure: 11/30/05
- Number of seizures in the past year (as of 12/26/06): 51
- Last time I took Ativan emergency anti-seizure medication: 7/5/06
- Most number of days without an SPS of any sort: 49
I also spoke of my interest in getting multiple perspectives from Duke and UVA for my second year of Temodar chemotherapy. Since Dr. Stone has studied and worked at both universities, that presented a classic networking moment. Dr. Stone gave me the name of a colleague she studied with at Duke who is still at Duke (and who Dr. Stone highly recommended). Excellent. Another person with whom I can consult when I make that trip to Duke later this year.
3.) FDLI Interview
I was interviewed for an hour by a freelance writer for the FDLI. This was in preparation for the 2/27/07 FDLI Colloquium on Access to Unapproved Drugs (see 12/28/06 online journal entry). Here are some of the clarifying points that came as a result of this interview (in no order):
- "Expanded access to unapproved drugs" was given as the title of this upcoming event. (The key new word is "expanded" access.)
- I was asked for my perspective on expanded access to unapproved drugs. This led to about a 30-minute qualification. For example, I embrace the innovators out there in the medical community who are YEARS ahead of WHO (World Health Organization) standards. My medical team at NYU falls into this category, I believe. If they were not so innovative, I may not have been able to have had my rare form of brain surgery. At the same time, I embrace the WHO standards in place with my oncology team at NIH. What Dr. Howard Fine is doing as he leads the NCI (National Cancer Institute) is world-class, and the only way he can get the best data about brain cancer drugs is to do so in a scientific manner. This means working closely with the FDA in the overall drug approval process, for example. In short, I have embraced both sides of the fence in my overall medical treatment. My relatively liberal surgical team stretched the limits and helped me have successful brain surgery. My comparatively conservative (my words) oncology team leads the nation when it comes to clinical trials of new drugs. Both approaches have worked for me during various stages of my brain cancer treatment.
- I was then asked what I would do if a.) all standard protocols of treatment AND b.) all available clinical trials were exhausted during the treatment of my brain cancer? What would I do then? I responded that I am attending this colloquium so that I can have a good answer to that question. After all, there must have been some very persuasive information that convinced a court to expand access to unapproved drugs. My scientific bias to the treatment of my brain cancer tells me to NOT do things that hurt the research going on at NCI, for example. But, I am okay with having my perspective challenged. Basically, I am open to being persuaded otherwise. I do think it will be a tough sell, but I want to be exposed to these countering perspectives. This will help me emerge with a stronger opinion, and this may be an opinion that becomes a part of my brain cancer treatment later in life. ("Plan for the worst, hope for the best." This is planning for the worst.)
- I was then told the following in sincere terms: "Your attitude as a patient is very significant...you bring to the conversation a perspective that most people (at the colloquium) do not have." Nice to know that my instinct about attending this event was somewhat on target.
Busy day!
I then returned home for a 2-hour nap and a new pile of medical bills from the past few days. Need I say more about brain cancer being a fulltime job? To me, it is all about attacking things head on with everything I've got. Hard to convince me otherwise.
