While in the hospital recovering, my oncologist planted the seed that if my tumor turned out to be malignant (i.e., cancer), there was something that they refer to as Standard of Care (SoC) that would be started. Again, she reiterated that I should be careful when researching GBM to not get hung up on the statistics I would see. She said every instance is different, and that I was starting the journey at a good place (good overall health, no other diseases along for the ride, etc.). And, she told me if SoC did not have the results she expected, then we would look into all available clinical trials and alternative approaches. She did a very good job keeping me focused on the long term, regardless of what I would find when I started searching for information via Google.
The start of SoC turned out to be 42 straight days of an orally administered (capsules at night by me wherever I was) chemotherapy named Temodar or TMZ concurrently with 30 doses of precision radiation aimed at the tumor cavity and the remaining cancerous cells in the fingers that the neurosurgeon could not safely remove (my understanding based on the radiation plan/map that my radiation oncologist showed me). I began the 6 week cycle of both on 5/28/18 for the chemo and 5/29/18 for the radiation, completing the cycles on 7/8/18. Some of my best memories of that time are the days (all 30+) I walked down the stairs (in the middle with no need for any handrails) into the radiation clinic for what turned out to be roughly 15 minute sessions. At the bottom of the stairs, every day, I was amazed at how my balance had returned. And, I did my best to share my exuberance with the clinic staff (who, by the way were phenomenal...perhaps more on that later). For radiation, I was fitted with a mask that was used to lock my head down to the table to ensure I was in exactly the correct position for each dosage.
A few weeks after the end of the 6 week cycle, I had my first MRI, and it was very clear/stable! I could not have gotten better news. Since then, I receive an MRI every two months and have switched to a chemo schedule of 5 days of higher dosage TMZ followed by 23 days off, so 28 day cycles, still all orally administered by me at home. Thus far, I have completed 6 chemo cycles and 4 MRIs. All MRIs have been stable, there are no signs of tumor regrowth activity. (I get two MRIs, one without a contrast dye and one with contrast. The contrast image is the one that would show tumor growth, swelling, necrosis (dead cells grouped together) from the radiation (which apparently can occur months after the last dose), or new blood vessel growth (also referred to as angiogenesis) which is a sign the cancer cells are gathering and working together to form a new tumor. So, again, so far, I could not ask for better news.
In July, I also started wearing a device called Optune which was FDA approved as a part of the SoC a couple of years ago. The device consists of a power source connected to transducers placed on my head (pictures and usage experience available if you are interested) which establishes an electromagnetic field in my brain which turns out to slow down the mitosis of the glioma (cancer) cells. So, it is a delay tactic to stall the recurrence of the tumor, which to date, is inevitable. It fits into my goal of delaying the recurrence as long as possible so the crazy-smart scientists can continue their efforts to discover the ultimate cure.
Throughout all of this, I have read many books about diet and cancer prevention. I have adjusted my diet to be plant first, healthy fats, lean protein, and whole grain. I have incorporated much more turmeric/curcumin, cinnamon, and ginger into my meals. I eat very little processed food and consume as little added sugar as possible. I refrain from eating what I call white flour products.
I have read many journal articles and about many clinical trials, also. The science behind the brain, its micro environment, and the challenges of delivering treatment that can cross the blood-brain barrier is fascinating. Over time and in consultation with my NO, I dialed back my research. With nothing to treat following surgery, months of stable scans piling up, and a recurrence that would present a new genetic profile, qualification for any clinical trials was highly unlikely. We agreed to do deep research when we had something to address. Plus, I figured out early on that I could skip the first two paragraphs of any articles or trial descriptions because all that was mentioned there was the dire state of GBM treatment and the median survival times. I only needed to read that once! In my case, we are focused on PFS (Progression Free Survival), monitoring for inevitable recurrence, and then OS (overall survival) which may send me back to the start of the surgery, radiation, chemo protocol and a new clock on PFS.
Update as of 2/27/19: I have had 4 clear/stable MRIs. I have completed round 7 of 12 high dose Temodar cycles. I could not ask for better news and I am grateful for the support of my family, friends and colleagues.
My next MRI will be on March 19th and I will post the results on or just after 3/20 on this blog, so please subscribe if you are able. :)
PS - In case I did not mention this in an earlier post, my tumor was MGMT methylated. This is important because methylated patients tend to respond better to radiation and chemo. That is, more cancer cells are removed via these two treatments when the MGMT genetic marker is methylated. Seems to be true so far for me! I have also had my tumor’s genetic profile assessed. That could be helpful to establish a starting point for clinical trial research upon recurrence, but again, the profile will be different, partly based on the glioma cells’ ability to mutate to hide from the Temodar.
Next up: Choices, Choices, Choices...
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