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10-11-2013, 10:08 PM
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#1
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Rest in peace, Mandamoo.
Thanks to the Downunder girls for sticking together and letting us know.
I felt that she was getting the best she could in the way of treatment.
Just so sorry that she has to leave her family at such a young age. My very deep condolences to them all.
__________________
"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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10-11-2013, 11:05 PM
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#2
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Senior Member
Join Date: Sep 2005
Location: melbourne, australia
Posts: 267
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Re: Rest in peace, Mandamoo.
I came home from a fab holiday last night to be confronted with this. I am devastated, to say the least, as she was such a beautiful person with time for all. I was planning on visiting her on my return. So quick as she only went to hospital and decided to stop treatment on September 24th. I know this date as she was meant to be with us on that day.
Dawny i am not sure if Amanda was changing her son's school, but she definitely saw him in uniform to start prep at school.
This is part of my post on the BCAUS forum i have been on since 2006.
Janine(founder) posted this quote re forum angels and i think it sums her up really well.
These are not women who succumbed or lost their battle. These are the women who teach us how to give, how to love and how to live; whose spirit is indomitable and their presence, in life and in their passing, is electric. For this we celebrate them. -- Tamar Paluch
She is to be celebrated greatly for being her, which was a beautiful person who fought hard to stay for her young family. Condolences to Brendan and her three lovely children.
Amanda will be greatly missed by those who knew her. xo
RIP Amanda
I am so sad i didn't get to see her. xo
__________________
Christine
DX Sept 03 age 40 Stage 2B Grade 3 mastectomy (after 2 prior breast conserving surgeries)
"at least" 2.3 cm 3/12 nodes ER+/PR+ Her2+++
8 FEC. Tamoxifen then Arimidex. Ovaries out.
"late" Herceptin for 2 years (18months after chemo) on HERA trial. finished Herceptin Nov 2007.
Multiple bone mets May 2012 and now liver August 2012.
Abraxne, Herceptin and Zometa.
June 2013 Tykerb, Xeloda and Xgeva
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10-11-2013, 11:23 PM
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#3
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Senior Member
Join Date: Sep 2005
Location: melbourne, australia
Posts: 267
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Re: Rest in peace, Mandamoo.
And more....
StephN, she tried Havalen as her last treatment but began to feel really unwell. This is when she went to hospital and was told if she kept up treatment she would die sooner.
This is a post she put 5th October when i asked after her well being:
I'm ok. Mainly just spending time sitting in my chair in our lovely front room. Quite a few visitors from Qld. I deteriorated quite a bit when I first got home but past couple of days have been better. I am very breathless on exertion and can no longer walk upstairs to my bedroom so we have moved into our spare room downstairs. The home care nurses have visited and will come twice a week to check my symptom management. I have a stool for the shower as I was exhausted standing and yesterday an oxygen converter arrived which I don't really need yet but just in case. I have my appetite back which is a nice feeling as eating gives me strength. I am living in blissful denial saving my energy, knitting, reading, writing, chatting.
A friend (who is having her 50th tonight!) rang her on Wednesday and she was coughing a lot. She and all of us are just so shocked by the suddenness.
I held Amanda in high regard for her extensive knowledge of this horrible disease. Unfortunately here in Oz we aren't up to you in trials etc. Amanda didn't want to waste time with her family(going overseas) to buy a bit more time even tho she had a very aggressive disease.
Thank you Amanda for the time you spent discussing my disease with me and for being such a positive influence.
__________________
Christine
DX Sept 03 age 40 Stage 2B Grade 3 mastectomy (after 2 prior breast conserving surgeries)
"at least" 2.3 cm 3/12 nodes ER+/PR+ Her2+++
8 FEC. Tamoxifen then Arimidex. Ovaries out.
"late" Herceptin for 2 years (18months after chemo) on HERA trial. finished Herceptin Nov 2007.
Multiple bone mets May 2012 and now liver August 2012.
Abraxne, Herceptin and Zometa.
June 2013 Tykerb, Xeloda and Xgeva
Last edited by chrislmelb; 10-14-2013 at 12:04 AM..
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10-12-2013, 02:23 AM
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#4
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Senior Member
Join Date: Feb 2007
Location: Paris, France
Posts: 858
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Re: Rest in peace, Mandamoo.
This is such a shock. I am so down. I just cant accept Amanda is gone. My thoughts go to her family and friends. 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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