In glioblastoma land no news is not always good news. I suppose it depends on the definition of “no news.” Stable scan with no changes? Good news. Me not posting any blog updates? No bueno. No sir.
Last we left off, I was staring down my first recurrence. I’m not going to lie, I was pretty terrified. The team and I settled on surgery and then Big R and I started hatching plans to ship off to Germany to get a personalized vaccine that would hopefully help alert my immune system to the presence of the tumor allowing my natural defenses to start fighting the cancer.
A Well-Deserved Rest
Feeling good, Big R. and I took a calculated risk to make good on our 10th wedding anniversary plans to escape to a Japanese spa in the mountains outside of Santa Fe. It was near-peak COVID-19, but I live now…now. We flew to the midwest to drop off Little R with his Nana and then took a train across the plains and the southwest to arrive in Santa Fe. New Mexico’s virus numbers at the time were very low and train travel seemed optimal for avoiding contact with others. It was AMAZING! The train ride was beautiful and meditative and when we arrived in Santa Fe, we lounged in outdoor spa tubs, sat in saunas, ate our fair share of Japanese food (and of course chiles), and breathed that dry, refreshing mountain air that smells of sage and pine. Perfection.
The Game Changes AGAIN
After we got home, I had an MRI on July 11 (the last one in the gallery below). The tumor had grown substantially in just two and a half months! Dr. D. concluded that meant the cancer had mutated sufficiently to be resistant to the chemotherapy. Glioblastoma is no f’n joke!
Pivot! Time for a new plan. It was going to take several months of lead time to have the vaccine manufactured and then at least another several months to know if it was working. Given how quickly the tumor had grown in just 2.5 months, those were months we were not willing to gamble with. With the help of Dr. D. and now Dr. W. at the Dana Farber Cancer Institute, I was accepted into a clinical trial. The trial consists of getting an infusion of the drug, Pembrolizumab (Keytruda), a so-called immune checkpoint inhibitor intended to enable my own immune system to attack the tumor.
After the first infusion, I had my third surgery to remove as much of the the tumor as possible. Glioblastoma is insidious, though. It comprises some “solid” tumor that’s relatively easy to see and some wispy tendrils that infiltrate surrounding tissue and are impossible to detect. So, surgery never gets everything. The latest surgery will be followed by an infusion of the drug every 21 days until I show disease progression or the trial analysis period closes. Apparently, getting the drug before the surgery has shown improved progression-free survival times compared to patients who only get it after.
The New What’s Next
The third craniotomy is now in the books. I just don’t have the post-surgical MRI to post yet. My sutures came out out yesterday. I may even be able to wash my scalp tonight more than 2 and half weeks after surgery. It’s the little things, people. The little things. In the next week or so, I’ll get another infusion and another MRI to see how things look inside this ol’ dome.
Do the Next Thing
In some ways I’m sort of grateful to be back in a structured regimen. The scariest thing about completing radiation and chemo was the absence of a “next step.” On the trial, there will always be a “next thing,” and that’s reassuring to me.
In the meantime, Big R has been generous enough to read to me books like “Anticancer” at night so I can take some steps toward a more integrative approach. I’m trying to find more inner calm, to improve my diet (Goodbye, Keto, it was decidedly not fun while it lasted.), to move my body more, to get adequate sleep, and to use social interactions to feel more connected to the people in my life who care about me.
What more is possible? I guess we’ll see.