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Old 11-01-2013, 02:02 AM   #1
KsGal
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Join Date: Dec 2011
Posts: 585
Re: NEDenise Downer Alert!

For goodness sake...whats going on with your body? While I am very, very happy this isn't being caused by cancer, Im am distressed to hear they don't know what is causing your symptoms so they don't know how to treat it. When I was coming off the steroids I slept almost constantly the first few days after reducing the dose, and I felt horrible. So I can definitely see the exhaustion aspect of it. Have they mentioned running any other tests to rule more things out?
You are always being so positive and giving everyone here support, so please know we are all here for you on the days you need support. We want to be here for you.
If it makes you smile even a little, I want you to know that when my balance was off, my kids called me John Wayne. They would say..oh, Mom is walking like John Wayne again.
I definitely pray that God guides your doctors into finding out what is causing this and getting rid of these nasty symptoms ASAP. Big hugs to you.
__________________
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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Old 11-01-2013, 02:59 AM   #2
michka
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Join Date: Feb 2007
Location: Paris, France
Posts: 858
Re: NEDenise Downer Alert!

Dear Denise, I am sending tons of hugs across the ocean hoping your oncs will figure out real fast now what is happening. The fact that you feel better after eating may give them a small indication. Glucose linked? But what can cause that? Oh how I would like to help you Denise... When I see what your Doctors have planned I feel that they are fighting for you. Hurry Docs! Love, Michka
__________________
08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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