A brief recap of last week's brain tumor news: Jean started another new FDA-approved treatment; old friends are standing by by her, and she would not object to receiving more help.
And here's the expanded version.
On Tuesday 6/26 Jean went to UCSF to for her Novocure fitting. Our previous email said she'd be getting a helmet, but as you can see from the Novocure_sans_style photo below, it's nothing that a knight, astronaut, or hockey player might wear. Instead, what touches the shaved scalp are four electrode arrays, each consisting of three rows of three electrodes, and held together with the kind of medical tape typically used to bandage wounds. The arrays are paired front/back and left/right, and electrical current applied to the pairs generate the Tumor Treating Fields (TTF) which earned Novocure its FDA approval. (The pre-Novocure picture shows Jean ready for Novocure in her extreme haircut, with our friend Nick who had accompanied her to the hair dresser).
|Pre-Novocure Extreme Haircut|
Color-coded cables from the array pairs lead to a device called the Connector, about the size of a cell phone, and a single cable from the Connector goes to a laptop-sized entity that the instruction manual just calls the Novocure device (ND herein). The ND can either be connected to a laptop-sized portable battery back, or plugged into a wall socket through an adaptor. The ND has a power switch on the side, and another switch on the front panel sends current to the electrode arrays. If the electrode arrays do not function as expected, the ND beeps and flashes a warning light, but there is no LED display to say what the problem might be.
Too bad, we could have used an LED display at the fitting. After being oriented on the device by three Novocure reps, and using a Norelco to remove bristles the hair dresser left behind, the dramatic opening moment was marred by a beep and flashing red light. First we checked the cables, and whether the electrodes were flush against the scalp (the most common sources of problems), then swapped out the Connector, the ND, and the battery back in turn. No dice. Then a Novocure rep plugged her laptop into a port on the back of the ND, and got the actual error -- it was an electrode problem after all. We checked again, and an electrode in the front array straddling the scar left by Jean's April 2011 craniotomy was slightly askew. We reseated that electrode array, turned back on the ND, and the TTFs started pulsing through Jean's brain.
The TTF work by polarizing cells, so when the try to divide, they fragment instead. They're set to a frequency that specifically targets GBMs. The energy creates a pleasantly warm sensation on Jean's scalp, as if making up for the shaved head.
To get the most benefit from treatment, we're supposed to keep those TTFs pulsing at least 18 hours per day. There's a 24-hour hotline to call if we get an error, and fussing with the electrodes and cables doesn't make it go away. The take home paraphernalia included a brochure comparing Novocure to chemotherapy; 20 spare electrode array patches; rolls of medical tape; a scissors; the Norelco; and a backpack and purse for carrying around the ND and battery (together these weigh as much as two hefty laptops). We'll need to change the electrode arrays ourselves, every three or four days, but the first change was scheduled to take place at UCSF three days later on Friday 6/29 to make sure we knew what we were doing.
|Novocure sans style|
We were glad to know they'd be checking up on us. Our first impression was that the Novocure is a lot to carry around; can malfunction in mysterious ways; and takes up time with detail work like head shaving and electrode array placement that it was easy to get get wrong. It seemed likely that we'd need some practical advice, and possibly help in solving problems crucial to the treatment.
And what do we think now, five days post-fitting, two days post-checkup? Things have gone rather smoothly after a rocky start. The checkup Friday was uneventful, Matt did most of the the shaving and electrode placement himself, and there was no error light afterwards. However, we have seen the error light at home three times, each one in the wee hours of the morning when Jean was asleep. But instead of a long, exhausted consultations on the Novocure support hotline, Jean quickly fixed the problem herself each time by reseating the cables going from the electrode arrays to the Connector, or by patting down the electrodes.
All the other problems we'd worried about have either not materialized or seem surmountable. Jean has not yet had the skin irritation that the electrodes cause in some patients. Back problems from lugging around the ND and battery can be mitigated by 1) using a rolling backpack; 2) having Matt carry them when we're out on a walk; 3) using a long power cord that gives about a 10 feet work radius. Dept. of Middle-Class Realities: The Novocure reimbursement rep called to reassure us that if Aetna turns us down completely, Novocure will pay for our use of the device themselves. And if Aetna offers us an unfavorable cost split, say asking us to pay 5K per month for our share of the durable medical equipment expense, Novocure will "work with us" on the payments. Fingers crossed.
And of course they're crossed for the big question too, how well those TTFs actually treat the tumor. If Jean's remains symptom-free, we’ll get some sense of how well Novocure and CCNU are working on August 8, when Jean gets her next scheduled MRI. By themselves, Novocure and CCNU (Jean's current chemotherapy) do not greatly benefit the majority of GBM patients, but there's reason to hope for synergy. She's also eating an anti-cancer diet (no meat or dairy, low starch and sugar, lots of soy, fresh fruit, cruciferous vegetables, and omega-3 rich foods) and pursuing alternative treatments: acupuncture, Tibetan medicine, and guided imagery. She's also using Celebrex and Tagamet, readily available medications reputed to have an off-label anti-tumor effect. And she's not reluctant to admit that she's using plenty of cannabis, which due to political reasons has not been given the serious clinical trials it deserves, but has shown important anti-tumor effects in laboratory experiments.
Novocure + CCNU + diet + cannabis + alternative medicine -- probably one of the best GBM treatment cocktails around, given the state of the art. Think of brave Jean doing all these treatments, determined to defy the odds, and wish her well.
Friends, Family, and Asking for Stuff
Many people wrote to us last week, and if we did not respond to your email that means we've been overwhelmed, not that your email was not read and appreciated. We also saw many of you last week, including Nick at the hair salon; Myung who came to the brain tumor support group in Walnut Creek Wednesday; and Pamela and Doug who took Jean out to the movies. Thank you visitors one and all.
As also mentioned in our last email, Jil Finnegan, a work friend of Jean and fellow cancer survivor, will be setting up an online sign-up sheet for those who want to bring us food and do other favors. If you live close to us, you will probably be getting email from her soon, if you haven't already. This raises a difficult topic -- after all, here we are Americans, but we're shamelessly asking for help, for you to give us something while getting nothing in return. A few words of explanation are in order, with the inevitable mixed messages, but please bear with us.
|Novocure with style|
First, feel free to to decline for any reason or for no reason, without worrying that it will become an issue between us. Sometimes you're just too busy, as we were ourselves, when we signed up to bring a meal to a dear, warm-hearted friend, and then had to cancel when we found out Jean's tumor had recurred. We wanted to focus on ourselves, and so we did. We often discover that what we can accomplish is less than what we set out to do. True for others as well?
Second, while the meals and favors are important in themselves, they're also about solving two symmetric social problems: What do you say to someone with a life-threatening illness? What does someone with a life-threatening illness say to their family and friends? You could come up with worse answers than "Here is a meal, eat, drink" and "Thanks for the food and drink." It doesn't cure the illness, but it's about more than a few calories.
If you're interested in how much more, and have time for a short story, try Raymond Carver's "A Small, Good Thing." In the end, one character tells two others that food is a small, good thing to offer someone when offering something seems especially important. In context these are powerful words, in that way that many of Carver's phrases shine as simple words that take on other dimensions. And knowing that does not spoil the plot, one of Carver's best. This story had the misfortune to be in included, with jarring wrong notes, in Altman's Carver-tribute movie "Short Cuts." Don't be dissuaded by that, but you may wish to hold off on reading the story if you're caring for young children.