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StephN · 11-22-2006, 12:17 PM

Dear Ken and Maryann -
I am distressed to hear that Tykerb has not had the desired effect. It seems to be like all the other drugs that work well in some patients and not in others. I am sure there will be some interesting reports from San Antonio in a couple of weeks that may shed some light on what is going on in your case.

I wanted to let you know that I have had two lumbar drains placed since June of this year. Very few people have a reason to need such a thing, but I wanted to let you know that I had virtually NO discomfort and no trouble after the removal with the insertion site healing properly.

In my case they went in between L3 and L4 with a tiny needle to allow the excess CSF to slowly drain so the leak area in the back of my head could clear. The first time I was fully awake and had no calming or pain meds. The Chinese resident who did it was excellent. The second time the drain was part of my surgery to repair the leak, so I woke up with it. For giving you something (the reverse), I am not sure they would need anything much bigger.

One bit of cerebral/spinal fluid trivia. It may surprise you to learn that our bodies make about 2 cups per day of this fluid. It circulates around the brain and through the spine and the excess is removed in a natural process as it is not needed. It is a closed system, but not completely closed.

Let us know how the whole process goes, or with the Omaya reservoir as well. I can only recall one member here who had the Omaya placed and she seemed OK with it.

KEEP AFTER GENENTECH on the reformulation.

11-22-2006, 12:17 PM	#7
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	Lumbar puncture Dear Ken and Maryann - I am distressed to hear that Tykerb has not had the desired effect. It seems to be like all the other drugs that work well in some patients and not in others. I am sure there will be some interesting reports from San Antonio in a couple of weeks that may shed some light on what is going on in your case. I wanted to let you know that I have had two lumbar drains placed since June of this year. Very few people have a reason to need such a thing, but I wanted to let you know that I had virtually NO discomfort and no trouble after the removal with the insertion site healing properly. In my case they went in between L3 and L4 with a tiny needle to allow the excess CSF to slowly drain so the leak area in the back of my head could clear. The first time I was fully awake and had no calming or pain meds. The Chinese resident who did it was excellent. The second time the drain was part of my surgery to repair the leak, so I woke up with it. For giving you something (the reverse), I am not sure they would need anything much bigger. One bit of cerebral/spinal fluid trivia. It may surprise you to learn that our bodies make about 2 cups per day of this fluid. It circulates around the brain and through the spine and the excess is removed in a natural process as it is not needed. It is a closed system, but not completely closed. Let us know how the whole process goes, or with the Omaya reservoir as well. I can only recall one member here who had the Omaya placed and she seemed OK with it. KEEP AFTER GENENTECH on the reformulation. __________________ "When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau Live in the moment. MY STORY SO FAR ~~~~ Found suspicious lump 9/2000 Lumpectomy, then node dissection and port placement Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR - Adriamycin 12 weekly, taxotere 4 rounds 36 rads - very little burning 3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED! 2003 & 2004 no active disease - 3 weekly Herceptin + Zometa Jan 2005 two mets to brain - Gamma Knife on Jan 18 All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying Continue as NED while on Herceptin & quarterly Zometa Fall-2006 - off Zometa - watching one small brain spot (scar?) 2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava 2008 - Brain and body still NED! Port removed and scans in Dec. Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011 STILL NED everywhere in Feb 2014 - on wing & prayer 7/14 - Started twice yearly Zometa for my bones Jan. 2015 checkup still shows NED 2015 Neuropathy in feet - otherwise all OK - still NED. Same news for 2016 and all of 2017. Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.