I'm now more than six months into the brain cancer that will probably take me to the Egress -- and I feel like a character out of Star Trek.
Star Trek: Voyager was about a starship that was suddenly tossed into a place where nobody onboard had ever been. It was so far from home that most of the crew was not likely to survive the long return using "standard" starship technology. A series of ambitious attempts to use better science included a bunch of failures and a few successes. The show lasted seven seasons.
Seven years of survival would make me a winner: The median survival for glioblastoma, also known as glioblastoma multiforme, or GBM, is about 15 months. (We published my story a couple of months ago about how my case was discovered. You can find it at dallasnews.com/jeffweiss.)
Like other GBM patients, like other people with mostly fatal illnesses, I have no time to waste waiting for treatments to develop in medically standard time. I’m making some ambitious attempts to identify the best, real science (while maintaining skepticism aimed at too much quackery).
What I don’t have, what I can’t have: An obvious cure or clear data about what the best treatments surely are for GBM. It’s an unusually unknown illness. What I can have: Constant access to an unusual flood of research and a close collaboration with my local neuro-oncologist, who is both expert and aggressive.
Starting with shaving my head for the first time a few weeks ago. The next day, a Novocure company trainer showed up at my house with an electronic device and boxes of stick-on electrodes. Why would living the rest of my life with the Optune electrodes on my head and a cord stretching out to the special zapper make a difference?
Because there’s some strong real-world data on Optune’s effectiveness against glioblastoma.
Why am I taking turmeric pills? Reishi mushroom-extract pills? A prescription pill aimed at Type 2 diabetics, Metformin? A prescription pill aimed at arthritis, Celebrex? A prescription pill aimed at depression, Prozac? And a chemotherapy pill, temozolomide, or TMZ, that seems not much good against the genetics of my cancer?
Because there’s some data on all of these choices that maybe the combination can boost the odds that I will live longer. (And yet I have no Type 2 diabetes, depression or arthritis these days. As Spock once pointed out: “Insufficient facts always invite danger.” But there are not sufficient facts to be certain about the best choices.)
And what about going after any of a couple of dozen GBM treatments in the experimental stage? Virus-based vaccines or autoimmune boosts or medicinal marijuana extracts? Might I push to be added to the relatively small list of patients trying one or more of them?
There’s some initial research data, after all. The huge and terrible test for me, for my doctor, for anybody else with my illness is figuring out which of so many treatment choices makes sense. And which does not.
None of the data point toward a cure. My best prognosis at this point pushes odds of survival only a few months past the median. And that means I have no time to wait the couple of years for large standard testing programs to see which of the choices succeed.
All I can do is try to improve my odds, and quickly. I’m looking for warp speed. Engage!
The zapper
The Optune zapper is one of the most unusual of all scientifically supported cancer treatments, and is the one with the strongest data and highest recommendations for use against GBM. My neuro-oncologist, Dr. Karen Fink at Baylor University Medical Center in Dallas, had patients in some of the experimental clinical trials a few years ago. She recommended it to me the very day we met in January.
Live long and prosper, Doc? (Voyager Captain Kathryn Janeway was an aggressive and creative leader who made hard decisions to benefit her crew. Dr. Fink is the real-life version of that for her patients.)
I asked Dr. Fink recently what she’d initially thought about Optune. “We thought it was a very odd technique,” she said. “But when they showed me the video of the brain tumor cells breaking up in this electric field, I thought, hey, this could actually work and wanted to be part of the trial.”
Optune use is a real-world physical hassle. Four palm-sized patches of electrodes are stuck to my scalp in a particular pattern. Every two days, the electrodes must be removed, my scalp cleaned and re-shaved, and a new set of electrodes stuck on. (My wife, Marni, has to do the electrode installation; I can’t possibly reach all around my head to get them on correctly.)
Sweat is a problem. It can make the electrodes fall off. Heat is a problem; if my head gets even a bit warm, an alarm goes off. When I leave the house, I wear hats to cover the odd-looking electrode patches.
And the retail price ain't cheap. I could rent a fancy Rolls-Royce for about $4,000 a month. The retail "rental" of the Optune is $21,000 a month. (Star Trek's Ferengi Acquisition Rule #62 is: "Profit is its own reward. The riskier the road, the greater the profit." Not so fictional, that.)
But there are zero mental side effects I can identify from the electric field. It looks like my insurance company will cover it. And there’s strong non-fictional supporting data for Optune, the most recent delivered by the manufacturing company at an American Academy of Cancer Research annual meeting.
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An international trial involving 695 GBM patients at 83 sites in the U.S., Canada, Europe, Israel and South Korea came up with this: Patients using the Optune plus standard chemotherapy had a two-year survival of 43 percent, vs. 31 percent for a group only taking one standard kind of chemo at that point. Survival at three, four and five years was 26 percent vs. 16 percent, 20 percent vs. 8 percent, and 13 percent vs. 5 percent, respectively.
Yay? Only 13 percent make it to five years? But there’s no other treatment that has shown close to that much progress on so many patients. Make it so, for me!
Some good news is that there looks to be a disproportionate number of other experiments against GBM, compared even with more-common cancers. The bad news is that not a single one of those experimental new GBM treatments have shown strong evidence of benefit. Yet. So what can I plan? And how? And for real, not for Star Trek.
What the what?
I wrote about my health problems in a Facebook post last March.
So far, so what the what? I've got a low blood pressure problem. Low enough to limit standing up and carrying stuff. May not be directly related to GBM scrambling my brain, however. I've lost about 12 pounds and am, ahem, urinating a bit more than usual. Medication reax? Maybe. Dehydrated? Maybe. Hard for me to rehydrate because I have no large intestine. Removed 27 years ago related to colitis/colon cancer. Which has mostly been ok. But I've needed IVs a couple of times related to an illness or two and fevers. I have appts with multiple docs on Wednesday. So I'm gonna take it somewhat easy. (How the heck did I manage Disney World last week????)
Facebook post, March 27, 2017
How am I doing these days? My standard reply remains “so far, so good.” But I have limits.
No pain. No loss of coordination. No seizures. Comprehension feels normal. I still battle to come up with some words in conversation, but it’s not much worse than right after the brain surgery in December that pulled out 95 percent of my egg-sized tumor. Most of my words came back. But not all of them, and not the sixth-gear thinking speed I used to have.
And I'm tired. A lot. Multiple naps many days, recently. I'm a while past the standard six weeks of radiation and chemotherapy. But there's no indication the cancer is back. Why am I so weary? I can get so tired that even the amusement of thinking about Star Trek is beyond me for a while. That's bad.
My expert doc thinks my natural stamina has dropped for good, based on her experience with far more than a decade of GBM patients. So I’m trying one prescription pill to raise my blood pressure. And over-the-counter caffeine pills.
I’m still napping daily. That means “normal” for me already means limits. But researching and planning my treatments to come are no small-energy tasks. I keep working at that. (Neither is writing about it as easy as it once felt. But I keep going. Logic is the beginning, not the end, of wisdom, Spock once said.)
One thing I use for research is Google. I have a daily alert for every link that includes the word “glioblastoma.” There are links almost every day.
Just one single day of links a few weeks ago had so much news for me to consider: One new screening program for GBM patients and three experimental medications called INSIGhT by the Center for Neuro-Oncology at the Dana-Farber Cancer Institute in Boston; a GBM failure report on the drug Opdivo compared to standard-of-care treatment with a drug called Avastin; a report that the FDA approved NuvOx Pharma to initiate a Phase 2 clinical trial for its experimental drug, NVX-10. And the recent report on the relative success of Optune. Hopeful, but hardly anything like an argument for a cure.
What should I do next, even if I based my plan only on that single day of reports? Much less all the other reports over the many days? And suggestions from Facebook friends. And ideas from other sources. So many choices. And I’m so tired. But I’m making sure now that my Optune is zapping me close to 20 hours a day.
Not a cure
Optune is an unusual treatment that had few scientific fans when it was created.
Dr. Yoram Palti, who developed Optune, started with an unusual theory. The professor emeritus of psychology and biophysics at the Israel Institute of Technology figured in 2000 that some molecules that help cells divide are electrical ions. If we put those cells inside a quick-moving electrical field, that might take those ionic molecules out of alignment and make cellular division very difficult. GBM became his target.
It didn’t become a cure, though. Why not? “That’s the million-dollar question,” said Dr. Elion Kirson, chief science officer and head of research and development for Novocure, the Israeli company that makes Optune.
It’s a question that applies to many cancer treatments backed with seemingly powerful theories but no evidence of a cure, he said. “The reality is that cancer is smarter than we are,” Dr. Kirson said.
Many cancers quickly evolve ways around individual specific treatments. Which means the only effective attack may be several treatments at once. A cancer able to figure out a defense for one treatment individually may not be able to handle two or three or more at once. Kirson suggests Optune may work best added to a cocktail of GBM treatments.
Which helps explain the batch of pills I’m swallowing daily. If I whack cancer cells with a series of different things with some evidence of effectiveness, maybe that will kill more of the GBM cancer cells off?
“We’re learning to turn it into a chronic disease instead of a fatal disease,” Dr. Kirson said of glioblastoma.
And by the way, why is an Optune more than five times more expensive to rent than a lovely new Rolls-Royce? From the complex and data-grabbing electrodes to the computer-driven equipment that pushes out the alternating-current field, it’s got specially designed and produced parts, Kirson said. And it cost hundreds of millions of dollars to develop.
“As a commercial company, we do need to pay back our investors at some point,” Dr. Kirson said.
Optune has some FDA approval, if not a full federal endorsement. Maybe more important today is something called the National Comprehensive Cancer Network.
The 27-center network includes the University of Texas M.D. Anderson Cancer Center, the Mayo Clinic Center, the Yale Cancer Center and a couple of dozen other hospitals with high-caliber credentials. NCCN claims its target is improving the effectiveness and efficiency of cancer care by recommending what might work. It added Optune’s electrical field to its list of recommended “standard of care” treatments for GBM last year.
That’s not a universal testimonial, but it has pushed some insurance companies into covering the expense. So I’m hopeful mine will follow as I need it.
We shall see. Spock borrowed this idea from the equally fictional Sherlock Holmes: "If you eliminate the impossible, whatever remains, however improbable, must be the truth.”
Plans for the future
So how am I doing? Here's the latest: About 4.5 months into glioblastoma, nothing much worse is going on that is tied directly to the cancer. Which is not the same as "nothing." My stamina/fatigue remains a real problem. Long after the surgery. And even a couple of months since the radiation/chemo. Several times a day I just run out of gas. And the likelihood of a return of the tumor is large over the next few months. My [neuro-oncologist] and her topnotch staff have been working with me on the "what's next" plan.
Facebook post, April 25, 2017
I’m set for an MRI every two months. Median evidence of new GBM growth is about seven months, so my worry will start to build very soon. Whether sooner or later, though, the odds are very high that the cancer will show up.
When the cancer comes back, Dr. Fink and I will be filtering our way through the many other treatments, the number of choices larger than one might expect. Like Voyager's fictional captain, she has a lot of data she's got to track and evaluate.
Why did glioblastoma get so much research aimed at it? Why do we have so many choices we need to assess? Anna Barker, director of the National Biomarker Development Alliance and professor at Arizona State University, gets credit from several experts for more than a decade of boosts in GBM’s experimental treatments.
Back in 2002, she was a deputy director of the National Cancer Institute. And she was setting up what became known as The Cancer Genome Atlas, a genetic compendium of several kinds of cancer. “I chose GBM as the first tumor we sequence in TCGA to catalyze what I hoped would be a tsunami of interest and new research -- and in fact that has happened,” she told me.
She’d learned that the illness was relatively unusual, relatively fatal, and there wasn’t much research going on at that point for better treatments. Maybe a new genetic map would draw interest? Even getting the analysis done required about 100 people, so that could immediately boost the number of interested researchers.
The good news was that the genetic atlas fired up a bunch of researchers, exactly as she’d hoped. But there’s plenty of bad news, she said. None of the new treatment ideas inspired by the study are demonstrating that the new genetic information helped with the design of a better treatment.
“The issue is there has been virtually no learning from success (none or near none), partial successes in a few patients, and failure,” she said via email. “We have not changed the survival of this disease in this decade. It is a huge disappointment to me.”
She’s one of several researchers trying to come up with new ways to combine two or more potential treatments at once much more quickly than the basic system of setting up clinical trials.
Hers has an entertaining name: GBM AGILE (for Adaptive Global Innovative Learning Environment). The idea is to make it faster and easier to include patients in the study who are trying multiple treatments, and using the data soon to shape the next series of treatment tests. “It’s a very complex trial that requires not just lots of science, but it will also require lots of funds, and we hope to raise a lot of these funds from philanthropy,” she said.
Which means the fancy-named Arizona State program is not up and running yet. Maybe next year? Along with the fancy-named Dana-Farber Cancer Institute’s INdividualized Screening Trial of Innovative Glioblastoma Therapy, a.k.a. INSIGhT? Or a series of other ideas that a variety of hospitals and researchers are trying to fire up.
Which one might help me? Can I wait long enough for any of them? Or will I need to push, with my doctor, for compassionate use or other access to treatments that might be showing a bit of evidence?
I may not have the choice or the time to wait. Which means I’ll be depending on Dr. Fink to help with guidance. She understands the challenge, for me and her other patients. “It’s walking a balance beam between acceptable quality of life, avoiding toxicity, and yet doing something that you feel is going to help because then there’s a better chance of it helping,” she told me.
So for now, it’s back to the TMZ chemo and its side meds, making sure the Optune is charged and working, and swallowing the Prozac, Celebrex, Metformin, turmeric and mushroom extracts. Because there’s some data that indicates they might all combine to keep me alive longer.
And that may be enough, may be adding to my hope, that I will live long enough for better treatments to prove themselves and become accessible.
Star Trek: Voyager ended with an absolute success. All that required was near-magical advanced technology and time travel used by the Voyager captain. That's fiction beyond the best I can hope for, to be sure. So I'll go with a different Star Trek captain for now:
“Things are only impossible,” Jean-Luc Picard said, “until they’re not.”
