25 August 2008
Monday, 10:25 PM
[Posted after listening to brain cancer patient, Senator Edward Kennedy, speak at the Democratic National Convention. He performed well, and the lack of hair on his left side was one of the few clues revealed about this brain cancer. This hair loss tells me that he is in radiation right now.]
High-Level Journal Summary: Thinking through the meeting with Dr. David Schiff, a neuro-oncologist at The University of Virginia. In short, Dr. Schiff did not have disagreements about the value of Avastin + Enzastaurin to treat the new brain tumor near my Corpus Callosum.
Dr. Schiff also generated a couple of questions to get resolved with Dr. Howard Fine. Not only did I get reinforcement for the validity of this tumor treatment, I also got some forward-looking perspectives. It's amazing what can happen when circles are expanded to a trusted audience like this (which includes other patients, caregivers, and doctors alike).
Countdowns:
1.) Day 28 of 28 in Cycle 6 of Carboplatin + VP-16 chemotherapy. The last "official day" of this type of chemotherapy treatment.
2.) On 8/26/08, talk with Dr. Dipti Patel, my hematologist and local oncologist, about possible treatments for the tumor in my Corpus Callosum.
2008 Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was 7 days ago.
2.) In 2008, I have had 77 SPS's in 238 days. This is an average of 1 SPS every 3.1 days.
Actual Journal: The meeting today with Dr. David Schiff was fairly brief. Surprisingly so. I remember our first meeting just after I was diagnosed with brain cancer. That first meeting lasted well over an hour as he patiently answered questions.
This was a strange meeting in one way. First, I was was not in Dr. Schiff's office. Instead, I called in my questions. It saved me about 6 hours of driving. Second, my parents could not attend. They were taking my nephew to the Fork Union Military Academy for his first day ever, so their instincts as Grandparents were kicking full gear overdrive (in healthy ways). In any case, I missed having several informed people involved to help banter questions. It makes a big difference.
Big conclusions?
The first thing we did is that I described what has happened since 4/9/07, the last time I visited Dr. Schiff in person. Back then, I was trying to decide how long to take Temodar chemotherapy. Dr. Schiff knew a bit of my status since he is on the mailing list for 38 Lemon, so he gets updates every month or so.
After concluding that I am a patient who could take Avastin, Dr. Schiff told me that it is a "rational study" to be in the Avastin + Enzastaurin Clinical Trial. "Both are well tolerated" and it is a "reasonable thing to do."
I was looking for a big disagreement with this recommendation from Dr. Fine, if one was to be found. It was not there. Instead, there was confirmation of such a recommendation. That is solid information to have. Two extremely prominent neuro-oncologists, both endorsing the same approach to the next treatment. While the answers to this clinical trial are not known yet, there are many reasons to participate, as listed in my 8/21/08, 8/22/08, and 8/23/08 online journal entry notes.
Radiation reaction?
Dr. Schiff did not have MRI's and other data to look at, so he was left with some questions to ask of Dr. Fine this week. When I told Dr. Schiff that one option is to leave this tumor alone for 2 months to see what happens on the MRI, Dr. Schiff did not see terrible danger in doing so. He said it could be done but would probably not change the data we seem to have at this point.
However, Dr. Schiff wants me to ask if this new tumor may be a "radiation reaction," which can sometimes be seen after radiation. I will certainly ask this question of Dr. Fine, but with the vigor of the National Cancer Institute (NCI), I would doubt that they would allow this. The Corpus Callosum cannot be radiated since it is fibrous materials which can be neurologically devastating if damaged. Why would NCI let the radiation session get this close to the Corpus Callosum? That is a patient perspective on this, but it seems to be a logical perspective. I'll ask Dr. Fine this question. Bottom line, what is Dr. Fine's confidence regarding this radiation reaction issue?
Plan B
I was prompted by Ernie of the Inova Brain Tumor Support Group to ask about the risk of being kicked out of the clinical trial at some point because of getting a blood clot. What would be done then?
This is an excellent question, because we had a friend from the group who was doing unexpectedly well on an Avastin trial at NCI when he had a blood clot. That removed him from the clinical trial, and sadly, Jack passed away shortly afterwards on 10/9/06 (see the bottom of the 10/14/06 online journal entry).
When posed this question, Dr. Schiff said that I could go off-label on Avastin at that point. That means that I would not be in the Avastin + Enzastaurin Clinical Trial, but I could still take Avastin, as administered by Dr. Dipti Patel locally. I will check with Dr. Patel on Tuesday morning to verify this information.
Close to a decision
After talking with Dr. Patel, I will reach out to Dr. Howard A. Fine at NIH with my last questions. It is possible that I will be able to make my final decision on my next treatment within 24 hours.
At the moment a decision is made, I plan on doing everything in my power to make such participation lasting. It is important to always have a Plan B, but I want to get maximum advantage from what is deemed the best treatment at the time. I always want to take these things as far as possible.
