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09-08-2006, 04:40 PM
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#1
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Senior Member
Join Date: Sep 2005
Location: .
Posts: 211
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Been a bit quiet
Hello all
I haven't posted for a while - or managed to even lurk. I am onto my 4th week of rads for skin mets and am very tired. My skin on chest is extremely red, raw,itchy ,stingy and weepy so I hope when it all heals the skin mets saty awaya for a while.At least I am only on Herceptin so am having a chemo break so to speak for the first time in years.I am hoping to start thr Tykerb( lapatinib here in Australia) application in October.Am trying to catch up on what had happened on the list. hope all are ok.
love
lindaw
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09-08-2006, 07:34 PM
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#2
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Senior Member
Join Date: Sep 2005
Location: Ontario, Canada
Posts: 752
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Lindaw;
So glad to hear from you. If you look at Sandy's posts she is taking lapatinib and doing well with skin mets. Let's hope you get it soon.
Cathy
__________________
Cathy
Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18
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09-08-2006, 09:30 PM
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#3
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Hi Lindaw,
The skin mets sound so uncomfortable, I really hope and pray the rads do some good. I just started rads to my right axilla for recurrent mets there, and have 3 doses under my belt, only 30 more to go. Keep the hope alive for Tykerb, as Cathy mentions Sandy is experiencing promising early response. So glad to hear from you again, don't stay away so long!
<3 Lolly
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09-09-2006, 03:58 AM
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#4
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Lindaw
Glad to see your post....we miss each other when you don't post for awhile....hoping your rad burns heal quickly and you feel brand new soon.....glad you are back!
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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09-09-2006, 05:38 AM
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#5
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Lindaw,
I can sympathize with the radiation burns. I will finish my rads on Monday and can't wait! I even tried to convince my radiation onc to let me have 2 treatments on Friday, one in the AM and one in the PM, so I wouldn't have to go back on Monday. Of course, he said no - didn't want to burn my skin too much -- it's already burnt to a crisp!
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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09-09-2006, 10:32 AM
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#6
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Senior Member
Join Date: Feb 2005
Location: Norridgewock, Maine
Posts: 778
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Lindaw I hope and pray this will be worth it in the end. From my experience with the Tykerb I would push to get the paperwork started now as it took me 10 weeks to get it as I was the first one to have it at my oncology. I am having good results but am on hold with the Xeloda because of diarrhea. We still don't know if its that or maybe, it is the flu as I am just hearing others who are having the flu with the same symptoms. I will update everyone as I know what is going on. Wishing you well and the burning and itching is not fun. I used an all natural aloe gel and that helped but didn't last for long. Couldn't have any thing touching the skin so no nighty at night had to keep the area open to the air. hugs, Sandy
__________________
Dx. 03/01, Rt. IBC
AC/Taxatere
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
Tykerb/xeloda
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Doxil
Updated 05-07 Scans show no bone or organ involvement we shall see!
I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
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