3 September 2008
Wednesday, 9:20 PM
High-Level Journal Summary: The finding of another new tumor in my left anterior frontal lobe. Since my last MRI on 8/19/08, this has grown to a 2 centimeter tumor. Immediate action needs to be taken.
Countdowns:
1.) Make plans for a potential start of a new type of treatment next week, as explained in this online journal entry.
2008 Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was 6 days ago. My White Blood Cell (WBC) count today was at about 2.2 K/uL, well short of the 3.0 K/uL requirement to be in the Avastin + Enzastaurin Clinical Trial at NIH.
2.) In 2008, I have had 79 SPS's in 247 days. This is an average of 1 SPS every 3.1 days.
Website Updates:
Small website changes were made throughout the day to help complete the transfer to the new server for 38 Lemon. As well, additional changes were made to help make the website more usable. This changes are too numerous and small to list off in detailed fashion.
Actual Journal: I wish I could write a more boring online journal entry this evening, but that is not the case. For the second MRI in 2 weeks, another brain tumor was found.
Dr. Howard Fine, my neuro-oncologist at the National Institutes of Health (NIH), found one tumor on 8/20/08 that is in the Corpus Callosum that is the size of a fingertip. It is small (4 mm x 7 mm).
Today, we found a new one that is much bigger. The 9/3/08 tumor is about 2 cm in size and has grown this amount in approximately 14 days. Is it older than that? Yes. But it only now that we recognize it as a distinct tumor on the MRI.
WBC count issues
If I were qualified for the Avastin + Enzastaurin Clinical Trial, we could attack immediately. However, my White Blood Cell (WBC) counts are still too low to begin this clinical trial. This presents a problem. This new tumor just pressed the "hasten treatment" button, so we do not have time to wait for my blood counts to get to the right level. We must act now.
Quick notes
This reading of my MRI certainly changed the meeting (as we expected it could). Many questions I had were based upon Dr. Fine's reading of my MRI, so everything got flipped upside down today. Here are some of the immediate notes which can be shared today with some confidence. In order of conversation:
1.) We can go with Avastin alone instead of in combination in a clinical trial. After all, Avastin for brain cancer is within about 2 months of being approved by the FDA (Food & Drug Administration).
2.) Avastin + Enzastaurin has a side effect. Collectively, they lower the WBC count. That is why this count is being so closely watched before we can even begin the Avastin + Enzastaurin Clinical Trial.
3.) One issue is that Avastin has NOT been approved by the FDA for brain cancer and is NOT in a clinical trial by itself any longer. It is expected to be approved by December 2008. Until that time, each IV-based delivery costs $20,000 instead of being covered by insurance. Ouch.
4.) There is great hope that we can get my insurance to cover this cost since we are so close to the approval date, but going from "free" to "$20,000 per shot" is a shock. It gets old paying for medical bills like this. I have kept up with all of them, but that means using the bulk of all my personal monies for medical issues for the past 4 years.
5.) According to Dr. Fine, "It is smart to start treatment for this within the next week."
6.) The location of this new tumor is in a good location. It is in the left/anterior frontal lobe. This is a "silent part of the brain." That is, there are no neurological functions there, so an operation is possible. We would not have surgery at this point because of the tumor in the Corpus Callosum and the need to treat that area, but it is nice to know that we have more options for getting to it if/when needed.
7.) We will have another MRI in just 4 weeks (instead of the usual 8 weeks).
More to come
There are more notes than this, but once again, there are many reasons not to share things unless I have a more full understanding of them. I only like writing about things we have flushed out in detail and understand well. We are not there yet with this left/anterior brain tumor.
Finally, it is worth noting that we are meeting with my local hematologist/oncologist, Dr. Dipti Patel, next Tuesday (9/9/08). That's when we can confirm this procedure and nail down the start date. I am anxious for this moment to come. I also feel good that the acceptance rate for Avastin is 70%, which is drastically improved from about 10% for my other 2 chemotherapy treatments (both of which had positive effect upon me).
