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09-29-2008, 04:44 PM
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#1
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Junior Member
Join Date: Sep 2008
Location: California
Posts: 2
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New to posting here..not new to BC or Herceptin
I am not sure how this forum woks...I'm probably posting in the wrong place.
lI was dx'd in 1-2000 w/ bi-lateral HER2+++, IBC, IDC, DCIS, @ Stage III. Had 3 A/C, double MRM, 4 more A/C, bi-lateral rads, ending w/ Taxol. Recurred skin mets in 6-02, and that is when I started Herceptin. (I now have mets to many lymph nodes in chest and abdomen. The skin mets are spreading, but so far, I've never had any open lesions.) To attempt making a long story short.....I had a chemo break from 2004 til 11- 2007. I've now been on and off different chemos since, and it appears I've become resistant to a number of chemos and to Herceptin as well. Tx options starting to dwindle & as my TM's are climbing, so is my anxiety.
My LVEF had gone down to 40, but I have been able to get it back up to 60, in anticipation of perhaps qualifying for the Phase II Super-Herceptin trial. Unfortunately since I've had more than 3 types of chemo, I do not qualify for this particular trial. However, another trial w/ Super-Herceptin was supposed to start recruiting this last July for people w/ multiple chemo usage along w/ having Tykerb fail, but it has not started as of yet. I have not yet tried Tykerb, due to ongoing GI problems, but my onc has said it is the next choice.
I am trying to find something other than chemo for control/stability of this stinking disease....any ideas/thoughts/advice?!
daybyday in California
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09-29-2008, 05:55 PM
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#2
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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DaybyDay
Welcome to our group...you are quite a trooper as you have had alot in 8 years, but the important fact is that you are still here and treatments are changing constantly. I am behind you a year or 2, but have also been finding resistance to chemo...just wondering if you could maybe try Tykerb/Avastin or Tykerb Xeloda...I know you said that the GI issues were concerning, but Brenda and Chrisy on this board are resident experts in these combos...i am sure they will respond.
Again, welcome, you have found a wealth of wise women and men here, who will help you in any way they can....the day i found this board was truly prayers answered. I do not think I could have made this journey this far without all the love and wisdom I have found here.
__________________
"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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09-29-2008, 06:29 PM
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#3
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Welcome Daybyday! Wish you didn't need to be here, but welcome. I've been reading a lot about Herceptin, Tykerb and Xeloda (or Avastin) combination. Lots of good results. Several can give you the tips needed to cut back the side effects of Tykerb. Lots of luck and best wishes. ma
__________________
MA in TX.
Grateful for each and every day....
Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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09-30-2008, 04:53 PM
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#4
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Senior Member
Join Date: Dec 2005
Location: indianapolis, indiana
Posts: 1,544
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welcome to the group. i'm sure you'll find the answers you need from someone here. wish i'd known about this group when i was first diagnosed.
__________________
dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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