Monday, 10:10 PM
High-Level Journal Summary: Taking a step back from a message left on 2/7/08 and the overall question it has generated. This is critical to where we are right now with my GBM+PNET pathology.
In trying to break down this overall pathology, I am also trying to understand exactly what I have right now. The word from the Radiation Oncology Branch (ROB)? "Astrocytoma that has transformed into a glioblastoma multiforme with PNET-like component."
This has generated a surprising amount of conversation, all of which I welcome. So that this discussion is shared, the most critical points among key players are shared. This is from a person named Kurt who asked an excellent question, my response to him, and my Mom's clarification on it all. The ultimate answer? That will come from our doctors at NCI, all of which is in progress. In the end, we are quite close in our answers.
Countdowns:
1.) Day 27 of low-dose chemotherapy. Chemotherapy continues every day, without stop.
2.) Day 19 of single-fractionated photon radiation at the National Cancer Institute (NCI).
• A round of single-fractionated photon radiation today gave me (an approximate) grand total of 40.2 Gy (of 60 Gy total). This is the ninth day that I had a round of 1.8 Gy radiation.
• That makes us 67% of the way towards our radiation goal at this point.
3.) On 2/12/08 at 11:00 AM, single-fractionated photon radiation will continue at NCI.
4.) My overall Decadron level went from [4 mg at 6 AM & 2 mg at 6 PM] each day to [2 mg at 6 AM & 2 mg at 6 PM]. This lower dose will continue slowly through next Sunday evening (2/17/08). We are coming down quite slowly from Decadron after the physical hemorrhaging issues we had back on 1/8/08.
2008 Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was 2 days ago.
2.) In 2008, I have had 25 SPS's in 42 days. This is an average of 1 SPS every 1.7 days.
Actual Journal: I wrote a response to a Messenger named Kurt in the past 24 hours. It was a good question from Kurt which looks ahead to what happens after radiation with low-dose chemotherapy, when I am transferred from the ROB (Radiation Oncology Branch) at NCI to the Neuro-Oncology Branch (NOB) at NCI.
For some reason, I am getting a lot of scrutiny about my understanding of what is going on. Good! I need to learn every day, and there is a boatload to learn. This question sparked a response from my Mom that was helpful, although not too far from my original thoughts.
I found this entire exchange to be extremely helpful, especially since it was all done with open minds as we all tried to wrap ourselves around what is happening. This is an accelerated path to understand what is happening in my brain, weeks in advance of what will happen in the Neuro-Oncology Branch (NOB). Very centering, all the way around.
Message from Kurt
Hi David,
I was just wondering. You seem to differentiate between GBM and the PNET portion of your new pathology. In your Daily Journals, your posts seem to imply that once radiation is finished, your GBM treatments are finished. You said a few times that once you finish treating the GBM with radiation, you will start treating the PNET portion with IV-based chemo.
You mention that you will treat the PNET with chemo but you never mention any further treatment for the GBM and you seem to imply that the GBM treatments will be over.
Since GBM always grows again, sometimes right after radiation and sometimes later, but it always comes back. You talk about and clarify what if any plans you are making for the GBM shortly after radiation is complete?
It could be that you consider that GBM and the PNET portion are both going to be treated at the same time with chemo, but I just don't get that impression from your posts and I am very curious for clarification.
Thanks,
Kurt
Message from me
Excellent points, Kurt. Your message generated further discussion. In short, the overall pathology always gets down to what is seen in a SINGLE brain cancer cell. In my case, that means GBM and PNET, both there in the same place. It is quite rare. This is not a matter of treating two different things.
I have much to learn, but suffice it to say that the GBM portion needs immediate attention because of aggressive growth. The MIB-1 index is 80%, and if it were just an MIB-1 index of 10%, radiation would be needed (from what I was told by my team). So, that is why we are in such attack mode.
The other important point is that when treating the PNET portion of the brain tumor, we must be in overall attack mode. How is that done? 3 weeks to recover from radiation and low-dose chemotherapy. At that point, my new chemotherapy will be IV-based instead of orally based chemo which I would take by hand. IV-based chemo is tough stuff. That is why fitness is so critical.
In the end, I know GBM patients out there who are 11+ years out from their initial pathology. That is my kind of crew. I want to join that team, for all that is worth in this world. There is just too much great stuff to do to help others and causes.
Message from Mom
Hi Honey,
I read your response to Kurt, and different portions of your GBM are not being treated separately. There is not the GBM portion and the P-NET portion. You simply have a GBM. Each GBM has different characteristics—each and every one. Some characteristics are more common; others quite unusual. The P-NET-like characteristics fall into the latter category, but no artificial distinction should be made between GBM and P-NET, as though the tumor is in some way "divided."
The optimum radiation (ideally—in the neat little classroom graph with sine curve) which kills the most rapidly-dividing cancer cells while at the same time sparing the most healthy tissue is that which kills 75% of the tumor cells. The remaining 25% (again, these are ideal percentages—real life is less precise) needs to be "mopped up" by chemotherapy. That chemotherapy is always tailored to the individual characteristics of each GBM.
Remember when Dr. Fine said, "An astrocytoma is not an astrocytoma is not an astrocytoma" to us? Well, the same can be said about a GBM. If 75% of the tumor cells were killed by the radiation, and the remaining 25% killed by the chemotherapy, that does not translate into 75% being GBM portion and 25% being P-NET portion. Have I clarified this for you?
Love, Mom
Make sense?
How I express my tumor classification is simply based upon my pathology reports from some of the best pathologists in the world. At the top of my early January report from the NIH/NCI/ROB is the following critical phrase:
CHIEF COMPLAINT: Astrocytoma that has transformed into a glioblastoma multiforme with PNET-like component.
That is the part that I am not letting go of as I read all that I study. I studied engineering at top levels at Virginia Tech, and have a deep technical background. So, none of this is lost on me, even in the midst of recovering from a second brain surgery, radiation, and low-dose chemotherapy.
I understand all these things. I am just saying that we are attacking different aspects of the same brain tumor at different times. Once we are done with the radiation, we are attacking other aspects of the same brain tumor with different drugs. Makes complete sense to me, although this can come across as a confusing concept to many.
The ultimate answer
The ultimate answer to all these questions? It comes from talking with the best of the best. That will happen with our entire team talks in detail with Dr. Kevin Camphausen and Dr. Howard A. Fine, both of whom are experts in my particular medical situation. This will come in time. Until that time, I am okay with some of this confusion.
The bottom line for me? I have a GBM, yes. But it also has PNET components in the mix which are quite rare. That makes it different that just a normal GBM, and it impacts what is being done overall in my treatment. If I did not have a PNET component as well, certain options would be off the table for me, plain and simple.
This is playing out as we speak right not. We are simply trying to get a little bit of a jump right now, without impacting my radiation treatment today. The GBM and PNET portions all exist in the same place and in the same cell. It is a fairly rare combination, from all that I understand. I can't wait to see it under a microscope sometime soon so I can have an image of what we are trying to bluntly kill.
