20 August 2008
Wednesday, 10:15 PM
High-Level Journal Summary: Learning that there will be no Cycle 7 or Cycle 8 of Carboplatin + VP-16 IV-based chemotherapy. Why? A new tumor was found in my brain today. While the work of the last 8 months has significantly reduced the size of the brain tumor growth from 12/19/08, we are now in attack mode in another area of the brain.
After all we have thrown at this brain tumor in the last 3.5 years, it is still an active tumor. We have to keep attacking it with the best treatments possible to date. We have about 1 week of time to decide all the next steps.
Countdowns:
1.) Day 23 of 28 in Cycle 6 of Carboplatin + VP-16 chemotherapy.
2.) On 8/22/08, get my fourth annual Neuropsychology Testing at NIH with Dr. Edythe Wiggs. Cheryl Royce, the lead CRNP for Dr. Howard A. Fine, requested a phone call about this event ASAP.
2008 Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was 2 days ago. Based on data I sent to Dr. Steven V. Pacia, my epileptologist, I now have approval to reduce my overall Trileptal levels by 150 mg (1 pill) every day. I think this will need to be coordinated with my neuro-oncology team first, though.
2.) In 2008, I have had 77 SPS's in 233 days. This is an average of 1 SPS every 3.0 days.
Actual Journal: There appears to be such a difference in services provided at different places. My last MRI at Inova Fairfax Hospital was on 7/31/08, and based upon the MRI's they had to view, they only saw improvement. When Dr. Howard A. Fine at NIH (National Institutes of Health) read my 8/19/08 MRI today, he had good news and bad news (my words).
Good news
The good news is that my new brain tumor mass discovered on 12/19/07 is about 90% smaller than back then. If I interpreted our conversation correctly, this was a rough assessment on the part of Dr. Fine. He said that we went from "about 100x to 10x in size. Significantly better than 6 months ago." When I viewed the co-registered MRI's from 4/29/08, 6/17/08, and 8/19/08, I could easily see the decrease in size because of the Carboplatin + VP-16 IV-based chemotherapy.
Bad news
Then Dr. Fine pointed to the Corpus Callosum, right there in the middle of my lobes near the frontal area. There was a new tumor growing. It is currently 4 mm x 7 mm, so it is small. However, it was not there 2 months ago, and now it has grown to this size.
Quietly, I wondered how Inova could have missed this new growth since they only had good news for me 3 weeks ago. Perhaps it is because Dr. Fine deals with brain tumors all the time and Inova does not have that level of experience. I am not certain, I do not want to be unfair, and I need to go back and look at those MRI's before I can be more assertive. Regardless, it shows the importance of multiple opinions.
What to do next
We spent much time learning about this new tumor, what it means, what treatments to possibly take, and overall timeline for attacking it. The choice is ultimately mine, but my reaction is to attack this tumor head on as quickly as possible.
The heck if I want this thing growing and attacking in that region of my brain. Because of location, surgery is not possible. As well, radiation and cyber-knife are not allowed for treatment. This took our options down to more chemotherapy, which is what we considered all along as the next step in treatments.
Clinical trial?
Avastin is the main drug we had thought was next, and that is one part of the formula. However, we did not think we qualified for any clinical trials that are out there. My Mom, Dad, and I all thought the same thing, but the answer is that at least 6 months must pass since the last bleeding issue in the brain. I last had a bleeding situation on 1/8/08 when I titrated from this drug too quickly after my 12/27/07 brain surgery, and I passed this 6 month mark on 7/9/08.
In this respect, I am now eligible for a clinical trial once again. I must also wait 4 weeks from my last day of chemotherapy, which will be next week on 8/26/08. But first, I have to confirm what treatment I would take next. That is no small task.
I don't have time to get into all these subjects tonight, but Dr. Fine went into detail about Avastin + Enzastaurin. Explaining this will come as I learn this week, over and above what I learned today. I do know I want to meet with Dr. David Schiff at The University of Virginia (UVA) next week to get another opinion. As a neuro-oncologist, Dr. Schiff is someone whose opinion I value. Adding his opinion and knowledge into the mix will only help in reaching a quick conclusion on what steps to take next.
Bottom line
This is another major turning point in my brain cancer treatment process. As Dr. Fine told me today, "We still have an active tumor after all we have done." That sums up where we are at the moment. We have got to aim in a new direction now and point a different gun in order to kill as many more of these brain cancer cells as quickly as possible.
One P.S. item that is worth noting. I would happen to qualify for this Clinical Trial on legitimate grounds. As such, all my financial concerns would go away. All treatments would be done at NIH. That is not the reason to make one decision or another. Medical efficacy is the main driver. Still, it would be nice to have efficacy as part of a Clinical Trial.
Ironic timing. This morning, I wrote my last (unexpected) check to pay off my 12/27/07 brain surgery. It was for interest. I cut that big whopping check for $0.01 (and then used a $0.42 stamp) and officially closed that account. I got done with that treatment and started to plan a new treatment, all on the same day. Wild.
