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.
I just came across your post. I hate to hear this news. I'm hopeful that the trial helps if you chose to go that path. I wish I could give you these amazingly hopeful insights and wisdom. I know almost 5 years ago all we knew to do was to trust our very smart and wise docs. We had the same ones. I hope that in 5 years they've learned from others. I remember one of the toughest parts of this was when I realized I had to make the decisions. That day where you have to stop and think about what they would want for themselves. I sat back and let Ben make choices for himself up until I had to for him. It's so difficult. And I wish i could give you a giant hug right now. You have a beautiful family and I so hope you have support through all this. What I want to say to you is stay true to what you all want, follow your gut and hearts. Even if it's the most difficult thing in the world; make movies, have him write letters to your children, do everything you can possibly do with whatever good time you have. I know people don't want to say these things but I wished I would have known what I know today. I would have done things differently. As far as your children if this helps at all. Willow was 8 when Ben was dx and 11 when he passed...she doesn't remember much. She doesn't remember the seizures, the surgeries, the treatments at all. She does remember the time when they spent it together. Thinking of you so much. IF you need to talk find me on fb!! :) Love to you all.
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