Thursday, 10:35 PM
High-Level Journal Summary: Excellent notes from meeting with Dr. Fine and team on 4/30/08 at NIH. While these are some more detailed notes, there are things I would never have predicted. I just go in with my team and listen hard to what is being presented. We have questions prepared, hoping to see what kind of conversation this will help to generate.
These are notes that once again cause a leap in knowledge. I have yet to have a visit with Dr. Fine where this does not happen. The quality is always that superior for me personally.
Countdowns:
1.) Day 17 of 21 in Cycle 2 of Carboplatin + VP-16 chemotherapy.
2008 Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was 2 days ago.
2.) In 2008, I have had 57 SPS's in 122 days. This is an average of 1 SPS every 2.1 days.
Actual Journal: Here are some of the detailed notes from meeting with CRNP Megan Mackey and Dr. Howard Fine yesterday (4/30/08). These are some things worth noting. In order of discussion:
1.) I have a slight problem with my left eye (as I look forward, my left eye). Many notice that this eye is closed too tightly, but I notice that I have too few eyelashes because of doing radiation. While there may be a number of issues driving this potential issue, it was suggested that I may have one-sided weakness. This would happen when I have motor strip weakness. That was is tested and watched on each visit. We shall just have to keep a close eye on all of these things, closely.
2.) The things which I will have to act upon closely is whether or not I get a sudden headache or not. If I have anything like this, I need to act IMMEDIATELY. Why? Because I could be bleeding in my head again (as on 1/8/08), and if this is the case, this might be an indication of a blood clot where immediate evaluation is needed. Time cannot be wasted in such situations.
3.) Per my 4/30/08 online journal, we looked at the T1-GAD AXIAL MRI. This shows lots of highlighting from the perfusion agent injected into the brain during the MRI. The dose and dose intensity looked solid to Dr. Fine, to the point where he said the following as we talked:
• "On target."
• "Doing what we want to do."
• "Continue if meta-stable."
4.) It is far too long in advance to make any predictions about how long this treatment will last. Dr. Fine only approves a single cycle at a time. When I pressed him for more information about what is humanly possible, he did say that it is possible to go to a 7th or 8th chemo cycle, all depending upon blood counts. This is something new to me. I never knew this before.
5.) Is it possible for me to take Avastin at some point in the future? It is dangerous -- even deadly -- for someone like me. Bleeding in the brain while taking Avastin can kill. That said, the longer we go on other treatments without bleeding, the more assured we become about using Avastin in the future. We get more and more data with the passage of time about whether Avastin is a safe option in the future.
6.) I asked about getting a PET Scan. Dr. Fine liked this idea so it can serve as a baseline. We will see activity, but getting this done is important. I will have this done now within the next 3 weeks.
7.) I asked about 5% of people with GBM diagnoses still living in 5 years. This was dangerous-sounding information. I was discouraged from listening to all such information about survival rates. Often, longer-term data is not included in such tally information, so the data can be slightly misleading. Internally, it is just hard to imagine myself as part of such a group. I plan on living, which I can say quite objectively.
8.) I asked about when I can drive my car again. Dr. Fine was hesitant and asked about who is in charge of this decision. I explained that epileptologist Dr. Steven Pacia has control over this decision, medically. Dr. Pacia said that the end of June, 2008 is a fair target, since that will at the 6 month mark without driving. Dr. Fine thinks this is a fair target, as well.
One more item
I did bring up one more topic. I talked about the DCVax® - Brain Phase II Clinical Trial (see 4/21/08 online journal entry). This ended up being an opening conversation, as I was hoping it would be. Dr. Fine presented arguments which were powerful and intriguing. However, it will have to be another conversation. It is far too much information for this single journal entry. Stay tuned.
In the meantime, time well-spent with Dr. Howard Fine and team at NIH. I remain so thankful for such tremendous service on their parts. There is so much to learn each and every time.
