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Old 06-05-2012, 02:40 PM   #13
Rolepaul
Senior Member
 
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 391
Re: Our T DM-1 Story Part 2 Tonight

To KDR,
Nina had 80 mg Herceptin and 0.400 mg of Topotecan given via an Ommaya reservoir (think packet just above the hairline with a tube under the skull) via a syringe feed in a method called intrathecal administration. A second dose of Herceptin (125 mg) with 42 mg of navelbine in a second bag was given the next day via IV. This was done for 16 weeks on a weekly basis. This was a compassionate care protocol and nobody but me thought it would work (okay Nina also thought it would work). Results were promising within two weeks, and confirmed on the first MRI results at four weeks. Prior to treatment in December 2011, we were told to "make end of life decisions", while June 1 (167 days after "The Talk") she was told there is no evidence of disease via MRI or PET scan. The neuro-oncologist said she could not find a record of this ever occurring in her experience. I know of four others, with four that I have not been able to find, that had similar treatment (IT Herceptin at a dose above 50 mg), but the others all had whole brain radiation. Nina did not. I have access to information at a level that people say is similar to Liz Salander in the Girl with the Dragon Tatoo, but I also have a strong pharm background.

Yanyan is right. This darn stuff can hide for a while, but once HER+ women are past eight years with NED, they are not likely to see a reoccurence. It is this frightening 4-7 years after the initial finding that is scary and needs the brain and spine MRI. I will do everything I can to beat this disease as my mother died from it and it has fought tough with my wife and me.

I don't like to lose (Star Trek II Wrath of Khan)
Never Give Up (The Untouchables)

I am in the pharmaceutical business because I can help people, but currently work with non-cancer medications similar to Herceptin. If my medication is not given to a patient, they die. There is no other outcome. I take this personally as well.
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