Tuesday, June 26, 2012

Jean treatment update

Brief recap of Jean's brain tumor news from last week: anxiety.

Expanded version. Last Friday 6/22 Jean started CCNU, her new chemotherapy drug, and tomorrow 6/26, she'll go to UCSF to be fitted with a Novocure helmet. CCNU was one of the first FDA-approved GBM "remedies", and the Novocure helmet, which works by emitting alternating electric fields that prevent tumor cells from replicating, is the latest.  The quotes mean that neither is a miracle cure, but we're hoping for synergy.  She'll be shaving her head tomorrow morning to get ready.

But it took a week between the time Jean agreed to try CCNU, and the time she picked up the prescription at the drugstore.  During that week she was moved to write an email to her neuro-oncologist asking about the delay, restrainedly observing that in 2011 the tumor had tripled in size between the time it was discovered and the time it was removed.

Meanwhile, we were filling out the forms to get started with Novocure, agreeing to pay $17,500 per month should Aetna refuse the claim.  Sobering.  The forms were accepted on Tuesday 6/19, and then there was a week's delay while a Novocure representative made arrangements to fly out to do the fitting.  Jean will be either the first or second UCSF patient to try the helmet, so part of the problem seems to be that they're still working out their procedures.  Not a very comforting thought, when you think there's something you don't want growing inside your head.

Other things happened too, which we plan to put in a longer post.  Call it friendship, the way some people extend themselves for you when you need it most, and neither party to the transaction will ever forget it.  A vast topic, and we intend to explore it some, but there's a practical upshot coming soon.  Jil, a work friend of Jean's, and fellow cancer survivor, created an online sign-up sheet, and we'll be posting that link.  We could use little kindnesses, meals, rides, your precious time when you hang out with us.  If that sounds pleasurable, there's probably a slot that will work for you.

  - Jean and Matt 6/25/12