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Old 11-06-2009, 01:57 PM   #1
StephN
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Location: Misty woods of WA State
Posts: 4,128
Re: vickie h update

Dear Cap -
I am still chanting that mantra - Vickie, Idaho, Vickie, Idaho.

There is a topical cream that has helped a lot of women with skin mets called IMIQUIMOD. I learned about a trial that is using it with Abraxane here in Seattle at the Tumor Vaccine Group open house I attended last night. The doctor in charge says that those with extensive skin mets don't do as well, but that cream is used off label.

Still the best results I have heard about with skin mets is the T-DM1. GO, Vickie! Pass those criteria with flying colors.
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"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.

Last edited by StephN; 11-09-2009 at 01:30 PM..
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Old 11-06-2009, 07:35 PM   #2
TriciaK
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Location: St. George, UT
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Re: vickie h update

I feel so much concern for you and Vicki. She has been such a warrior and such an example to all of us. Please remind her again how much she is loved and how we are all praying for you both, and please let us know as much as you can how she is doing. Our thoughts and prayers go out to you to find what is needed to help her. Hugs, TriciaK
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Old 11-09-2009, 07:31 AM   #3
WomanofSteel
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Location: New Jersey
Posts: 889
Re: vickie h update

Keeping Vickie in my prayers. Hope things work out for the best.
__________________
dx aug 03
invasive dcis 1 cm
er/pr/her2+
bcs 8/4/03
bcs 8/21/03 0/16 nodes
tx 4x ca 36 rad tam
postmenopausal 06 aromasin
sept 07 biopsy node in neck
muga/pet/cat/bone mets to lungs nodes and liver stage iv
tx hki-272
tx not working switched to taxol herceptin
Taxol not working switched to navelbine
navelbine is causing bad neuropathy
starting gemzar
gemzar quit on me now on Ixempra due to increasing number and size of liver mets
another progression starting tykerb/xeloda
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Old 11-13-2009, 04:25 AM   #4
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Re: vickie h update

Good Morning Vicki and Cap!
Wanted to say hello and that I'm surely thinking about you guys.
Much love and lots of prayers.
ma
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Old 11-17-2009, 04:48 PM   #5
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Re: vickie h update

Thank you for your prayers. We just got back from Idaho, where Vickie was the last one enrolled in the TDM1 trial there. She had her first treatment on Monday and she is feeling ok except for fatigue. I believe one of Steph N's friends is going there also. We are definitely praying this works, but if for some reason she doesn't respond, we are ready to live out her life with some quality of care.
She so cares aBout all of you and talks about you like she would a trusted family. Her pain meds are sustaining her and we will know more soon. She misses you all and can't wait to get on the computer again and talk to you.
Again, my sincerest gratitude for your love and kindness.
Cap
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