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Old 12-17-2007, 11:03 AM   #1
Lani
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Join Date: Mar 2006
Posts: 4,783
I was totally exhausted attending the meetings, presentations outside of meeting hrs

poster sessions, etc during my 5 days in San Antonio and my flight was delayed and I had 8 minutes to transfer from one flight to the other with my luggage not making it onto the plane with me. My luggage was delivered at 3 am, hence my posting in the wee hours.

It will take me to unpack the bags, find my notes, before even thinking of posting the names(with the exception of the author of my "favorite paper"...In my tiredness I mused that this was sort of like a singing, dancing or beauty contest, where half the fun is in the anticipation of finding out who one. The author of my favorite paper was the only one who felt she first had to check with her institution as to how it best be done and who encouraged me to find out how many of you are activist "warriors" rather than sheep who find it more comfortable to follow. (Nothing wrong with sheep, in fact I am very fond of them!)

Nevertheless, I have been disappointed to see yours as the only reply to my thread so far. I see this project as of monumental importance if the her2support group steps up to the bat and
participates fully. It would be groundbreaking and pioneering if it were to come to fruition.

Five days away from home has left much undone. And I will be more useful to the task once I have rested.

A few "thanks for your efforts in talking to all these people" and "please, please end the anticipation and let us know who these researchers may be so we can get this project on its way" would have gone a long way. But the morning is still young...
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Old 12-17-2007, 11:39 AM   #2
StephN
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Location: Misty woods of WA State
Posts: 4,128
Wink Where can we take this?

Dear Lani -
We have not forgotten your "mission" in San Antonio. In my case I am just trying to digest ALL the new information that has been posted here in the past week, as well as waiting for you to get unpacked and find your information.

As one who as attended the San Antonio symposium twice, I totally understand how the high energy and constant presentations can affect one's ability to keep every last detail straight. Personally, I have never experienced such an intense energy level as felt at that symposium.

It is like people's brains are bouncing off one another. There is important and stimulating conversation at every turn. Information overload is very easy to attain, and you went the extra mile to seek out presenters and researchers that might want to leap ahead with HER2 research.

THANKS!
__________________
"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.
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