Friday, January 20, 2012

Stone Knives and Bearskins

"Captain, you're asking me to work with equipment which is hardly very far ahead of stone knives and bearskins." - Spock, to Captain Kirk (from "The City on the Edge of Forever" episode)

As far as treating cancer, it seems like methods haven't changed that much since my grandmother died of colon cancer some fifty years ago: heavy doses of radiation followed by debilitating chemotherapy.  Sometimes it works, sometimes it doesn't.  Interesting and encouraging new treatments appear on the horizon and then fade into failure and disappointment.  There has been good progress in conquering some forms of cancer, but others remain tenaciously hard to beat.

My brother has been through the radiation and chemo wringer.  After a year of the "gold standard" chemo, it has proved to be ineffective, so now we work our way through a list of alternatives.  Meanwhile, we've kept our eyes and ears tuned to the latest research, clinical trials and FDA approvals.  We have him taking a cocktail of supplements for which he needs a schedule to keep track.  I encourage (unsuccessfully so far...) him to incorporate dietary changes, yoga and meditation into his treatment regimen.  Any and all options are on the table.

This past week at The Santosh Kesari Laboratory at the University of California San Diego we got him started on something completely different.  When my brother was diagnosed in October 2010 with glioblastoma multiforme (GBM) the family dove into the internet looking for anything we could find on treating this deadly disease.  One of the things that popped up was something called the NovoTTF - described as a helmet that used electric fields to disrupt the growth of cancer cells.  Real out-there stuff, but intriguing.  At that time, the device was still in clinical trials, so my brother opted for the traditional treatment regimen: radiation and chemotherapy.

Meanwhile, the "helmet" was approved by the FDA for use in the treatment of GBM - neuro-oncologists could being prescribing it once they were certified by the inventing company, Novocure (based in Israel).  When we learned that the standard chemotherapy was not working for my brother, we immediately went back to the idea of the "helmet."  Only a few clinics in the country are as yet certified to prescribe the device and San Diego was the closest one to my brother.

Long story short, my brother is now wearing the device.  It is not for the faint of heart.  It is cumbersome, awkward and elicits stares and sometimes polite, sometimes rude, questions.  The head has to be shaved clean.  The batteries are huge, heavy and last only two hours - which means planning ahead even for short trips is a must.  The device beeps if it gets too hot; it beeps if the power wavers; it beeps when the battery dies.  It must be worn for a minimum of 18 hours a day.  It comes with a large rolling case (a la band roadies), a large bag of redundant equipment in case something fails, and a tote for razor, bandages, scissors, rubbing alcohol and medical tape.  Long cords get in the way of putting on coats, moving quickly and getting in and out of cars.  The patches that house the thermistor disks are sticky and tend to get tangled and mangled - and they must be replaced every 4-7 days.  No doubt this will change over the years and the device will become streamlined, but for now, it's a real pain in the ass.

But there is no argument that the bigger pain in the ass is a diagnosis of GBM.  So despite all of the hassles, we are grateful for this option.  Despite the primitiveness of it - the "stone knives and bearskins" aspect of it - we can't help but imagine what a breakthrough this device could prove to be - and not just for people who suffer from GBM - but from other types of cancer (Novocure will launch a device for lung cancer next).  Maybe all of this time we've been barking up the wrong tree.  What if toxic chemicals and poisons aren't the answer?  Imagine what a miracle it would be if cancer patients could be cured with a device that is painless and produces virtually zero side effects.

7 comments:

  1. Wishing your brother all the very best Annie and I really hope the helmet proves to be an effective treatment for him and others. I appreciate you posting the photos of the device, it's good to be informed just in case I happen across anyone wearing one. My kids can be pretty curious about stuff like that (one of my kids has spent lots of time in hospital...) so it's good to be armed with some info. Again, all the best to your bro, you and your family.

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  2. wow, a helmet? i would have never thought. talk about alternative. here's to hoping that it helps your brother and the hassle of lugging around and changing the batteries, etc, it works. i can only imagine how difficult it is for you and your family to go through having a loved one having cancer. best of luck xx

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  3. Well done - both getting it on to the Etsy blog site, as well as having the courage to post it. Congratulate your brother too, for allowing you to go public. Candle was lit eventually last week-end: another will follow today. Prayers and strong hope for the success of this treatment. How long does this therapy endure? All the best - as always.

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  4. I hope the treatment is effective. It does look like quite an ordeal.

    Cancer is such a scary disease. Even when you think you're clear, it seems to be in the background waiting for another chance to pounce. My brother is still recovering from his spate of surgeries for stage 4 renal. His last scan was clear, but we just hold our breath.

    Best wishes to your brother.

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  5. Praying continually for your brother...I have lost family to cancer, and I know what a monster that disease is, and we must try everything to beat it! I have never heard of this helmet...I'm praying that it works!
    Debbi
    -ourhometoyours

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  6. Thank you, all, for your sweet thoughts!

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  7. WOW! Annie he is going to have a hard time wearing that. It sucks that some people have been rude about seeing him wearing it. Call me if I can help with anything. -Dan

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