Brian’s surgery went well. The surgeon was able to remove the bulk of the tumor, but a small amount was left behind just because of the area of the brain where it was located. It would have been difficult and hazardous to remove anymore. We received the pathology results and unfortunately, the tumor has progressed to a grade IV which is also known as glioblastoma. It’s the most aggressive form of brain cancer.
Yesterday, Brian’s 37 stitches were removed and he continues to heal well feeling a little bit better each day. Today we met with the neuro oncologist and while we got a lot of information, I feel like I’m left with more questions than ever. I have received many messages and phone calls asking how it went, so I thought I could address the news in a single update.
The results from the genetic workup of the tumor from Mayo Clinic are in. Radiation and Temodar, an oral chemotherapy, are the gold standard for glioblastoma. There are a few prognostic indicators doctors use to give an idea of how well someone will respond to treatment. One of these is MGMT methylation (read more here). In very simple terms, as far as I can understand, MGMT is a repair gene in tumors. Methylation is a chemical change that can occur that interrupts the tumor gene’s ability to repair itself. So, simply put, MGMT methylation is a good predictor of chemo efficacy. You want to be MGMT methylated. Brian’s tumor is unfortunately non-methylated meaning Temodar will be less effective. This was not wholly unexpected as his astrocytoma was resistant to chemo as well. Last time we were concerned with a different chromosomal mutation, and the connection between that mutation (1p19q co-deletion) which he also lacked, is variable, but probably related so I really wasn’t surprised with this news. Tremendously disappointed, but not surprised. It was because of the lack of the 1p19q co-deletion and the insensitivity to Temodar that we decided to do whole brain radiation six years ago at his initial diagnosis. This means he is unable to undergo radiation again so close to his last dose. This has less to do with how it would positively affect the tumor than how it would adversely affect his healthy brain tissue.
So where does this leave us? We can’t do radiation, and due to the non-methylation of MGMT, Temodar probably won’t be as effective.
Brian will still be receiving Temodar because it will still be effective in that it targets the tumor; the tumor cells will just be able to repair themselves faster than they would otherwise. There is an FDA approved wearable device called Optune that creates an electric field around the tumor to disrupt the growth and reproduction of the cancer cells. Brian would wear electrodes on his scalp that connect to a portable, battery powered electric field generator. Very sci-fi. He would wear the device for at least 18 hours a day and it has been shown to increase survival by an average of 4.6 months, which is a lot when you are dealing with glioblastoma. There are very few side effects aside from the inconvenience of toting around the device everywhere you go.
There are also clinical trials we are looking into. The most interesting of these is oncolytic virotherapy (see here). Because of Brian’s age and overall health, Dr. Geoffroy thinks he would qualify. This is a newish, therapy that uses a virus to hijack and destroy cancer cells. Hypothetically, these viruses then replicate to create new virus cells that keep attacking the cancer cells. Some of the phase I trials have been promising.
We see the doctor again in one week and by then he will know if Brian is a candidate for the clinical trial. For now, we are definitely planning on Temodar and likely Optune, but this is a lot to process and Brian is going to think things over and study up for a few days.
I for one, am on information overload and I have a lot of reading I want to do too. There are a lot of decisions to be made and so many things to thoughtfully, and prayerfully consider. Thank you to all of our friends and family for continually reaching out, praying, and helping us to truly know that we are not dealing with this alone.