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Old 11-30-2012, 09:41 AM   #9
Rolepaul
Senior Member
 
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 391
Re: brain metastases leptomeningeal

I am sorry about not responding previously but work and personal life has been very busy. I can tell you that Nina received 1.3 mg/kg of Herceptin with 0.4 mg per dose of Topotecan via intrathecal Ommaya. The 20-40 mg dose amounts of IT Herceptin are not sufficient to stop the disease. The spinal fluid turnover is 10 times what the blood turnover is, which means the half life of drugs via Ommaya is that much shorter. There is a method in the treatment that we did for Nina, that Mario is helping get for Carol, and what the Europeans did in 2008. I would suggest that they look at 80 mg for a 132 pound bodyweight and scale the dose from that. I am sorry that the Ommaya reservoir initially failed and hope that the new one works better. Have them contact MD Anderson in Houston, Dr. Loghin in the Brain and Spine Center for more information. My thoughts are with your friend.

Nina is doing great. Next MRI between Christmas and New Year, which will be one year since the spinal lesions were found and we are four weeks passed from the anniversary of when three years since the brain lesion was found. Four miles a day walking, yoga three times per week, studying Spanish, driving, flying to Houston from Raleigh for treatment without any help, arranging her appointments, and in full recovery. Her case may be brought up at San Antonio, but I am not sure.
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