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11-20-2006, 03:02 PM
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#1
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Member
Join Date: Apr 2006
Location: Wisconsin
Posts: 10
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looking for help and guidance on next step
I am hoping you all will not only offer some help but also give me some hope. I was diagnosed 03/06 with stage iv er-/pr- her2+++ mets to the bone (about 5 locations). I went through 4 cycles (each cycle being 3 weeks on/1 week off) of Taxol/Carbo/Herceptin. After the first month, the breast mass was no longer palpable. At my 4 month follow up scan in August, all of my bone lesions were healed, there was no further disease. I was told that I had a complete response. Such great news. I was so happy. In September, I noticed some breast changes. My breast continued to get harder and although I knew in my heart that the cancer had returned, I denied it and assumed it was post chemo changes. We watched it with MRIs and ultrasounds, there was not a specific mass to biopsy but a large diffused area. I had another CT scan on Nov 4. It showed the bone lesions still only healed, no progression, some skin thickening in the breast and a small 2 mm nodule on my lung (another thing that I am freaked out about). My oncologists and I agreed that bilateral mastectomies would at least help me emotionally, by not having to continue the huge number of tests. The pathology came back today. There was a large approx 9 cm tumor removed, clear margins. I am devastated. I had so hoped that it was fibroids or something else benign. How could it come back so fast and so big? What do I do now? What are my options? Has Herceptin already failed? I am so sad and scared. I need more time with my children and husband and family. Any advice would be greatly appreciated.
Laura
diagnosed stage iv 3/06
mets to bone
T/C/H 4/06-8/06
complete remission
continue Herceptin every 3 weeks
11/06 bilateral mastecomy
?????
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11-20-2006, 03:49 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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Laura
It sounds like bilateral mastectomy is in order...there are many of us Stage IV women here...you will get many answers, love and support...there is always someone who is in the same boat, or has taken the ride!. I have been stage IV for 3 1/2 years,,,still looking forward!
__________________
"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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11-20-2006, 05:17 PM
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#3
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Deceased
Join Date: Oct 2005
Location: Chadds Ford, Pa
Posts: 206
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Hi Laura,
First of all, you are at the beginning of your fight, not anywhere near the end. I know it's scary - I had liver mets that responded well to the carbo/tax/herc combo and I had a complete remission. However, my mets came back within 4 months. So it's aggressive - I get it - but we can be too.
I also thought that I would have been considered "failed" on herceptin, but my onc kept me on it and added a different chemo because it is felt that the herceptin has synergestic effects with many different chemos. And so it begins again. Try to think of it as a chronic disease, we will try different regimens, some will work, others won't but there are LOTS of treatment options out there and better therapies are on the way.
So try to breathe! Hug your kids, kiss your husband, have your pity party (you deserve it) then pick yourself up and start the fight again, sister! You know you can do it!
Sending good thoughts your way,
Donna
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11-21-2006, 04:58 AM
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#4
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Senior Member
Join Date: Sep 2005
Location: Melbourne Victoria
Australia
Posts: 330
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Hmm
Hi Laura
I would bet a lot of money that your tumour was there for a long time but not detected by mammo/ultrasound etc. My second tumour in the breast I am sure was there all along just small and not detected at the time of removing the first 2 cm lump. Despite scans and ultrasounds my second tumour was only detected by core biopsy and it was 4 cm x 2 cm...I asked "how can I grow something this big and it not show up?" silence from onc..
real Answer= dense breasts/fibrocystic disease = scans can't tell what is going on..
I wish I had had the breast off the first time..which is what I wanted! Then just maybe I wouldnt have had a liver spot 2nd time and become stage IV.
Anyway we live and learn..keep fighting.
Jackie
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11-21-2006, 12:04 PM
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#5
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Senior Member
Join Date: May 2006
Location: northshore suburb of chicago
Posts: 1,093
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Of course you are scared and who wouldn't be but keep reading on here. There are so many Stage IV women who are doing okay and you will too. Just don't give up the fight. I know it is easy for me to say but heaven forbid this should happen to me, and we all know it can, I will battle it with everything I have and then some. You must make sure the onc is doing everything he should and so that means research and network with everyone here. Good luck.
__________________
~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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