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Old 07-20-2008, 06:15 PM   #21
chrisy
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Location: Central Coast, CA
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Your life is not over

Goops,

Sorry I have not seen this post, I've been at my 12 YO niece's birthday party in Chicago all weekend...

First let me say , well $&*T!

Second, let me say that although this is obviously not the news any of us wanted for you, your life is not over!

I remember like it was yesterday when I was diagnosed with extensive liver mets (after an original diagnosis of DCIS only). It was the most devastating day of my life. That was nearly 4 years ago. Do not lose heart.

You have treatment options which can still work well for you. I'm sure your oncologist has your best interests at heart and wants you to do well. He/she obviously knows the specifics of your situation better than we do. However I'm also concerned as others have noted, because you DO have symptoms - indications that the cancer may be interfering with your liver's healthy functioning. So it's a bit scary as you need to get control of it, and the questions bear asking.

I also wonder if you have gotten second opinion (or third as some have suggested). You do want to be sure you've considered all your options.

That said, Fulvestrant is not an unproven therapy - it's an approved treatment for ER+ metastatic cancer. And blocking the ER pathway PLUS Her1 and Her2 is a good concept - so this trial is actually quite interesting.

Although most people's initial reaction to a diagnosis of liver mets is to blast the living daylights out of it, it may indeed be reasonable to try a less aggressive approach - if your disease is minimal and easily monitored.

To me, this is key because you definitely want to gain control of the disease in the liver. Although you describe 1 "large" and several "smaller" mets, you don't know how fast it is growing. So especially if you are in a placebo comparison trial, you must be vigilant so you can move on quickly if need be.

It is important that you do get multiple opinions - and that you trust your team. You will make the right decision for you.

Just know that we are all here to help you in any way we can, we care about you and are praying for you.

Love
Chris
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Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 07-20-2008, 06:33 PM   #22
goops
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Thanks Chrisy - I considered getting a 2nd opinion but I do not care to deal with either of the other 2 oncologists where I receive treatment. It would take me weeks to see an Oncologist at the only other hospital in town and they are a hospital in which I have no faith in.

All of their internal Medicine doctors quit over policies that dictated that they spend only a few minutes with each patient. That hospital has proven over and over that they don't really care about their patients. I do have faith in my current oncologist.

My doctor believes that my symptoms were the flu. Since I no longer have a high fever, he is probably right.
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May 2007 - Stage 3A, 12 positive nodes, her2 positive
July 2008 - Stage 4 - Liver Mets

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Old 07-20-2008, 11:07 PM   #23
harrie
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Goops,
I am sorry to hear of your liver biopsy results. I am in complete support with those that are recommending a second opinion.
Sending you lots of aloha,
Maryanne
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*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 07-21-2008, 02:00 PM   #24
chrisy
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Fulvestrant = Faslodex

Hi,

Thought this might be helpful - in the thread about Faslodex (Fulvestrant)


http://her2support.org/vbulletin/showthread.php?t=34824
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Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 07-21-2008, 06:50 PM   #25
Sheila
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Goops
Listen to Chrisy...she is like the expert resident in liver treatments....to see her you would never know that she has this battle...she is so healthy looking and full of energy....do get another opinion or 2 if you can....at least you will feel comfortable with your course of action....you are in my thoughts and prayers......
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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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Old 07-22-2008, 09:53 AM   #26
goops
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Thank you for posting that thread Chrisy, it is kind of funny because the woman who started it "Janet Taylor" has the same name as me.

It is nice to see that people have tolerated the drug well.
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May 2007 - Stage 3A, 12 positive nodes, her2 positive
July 2008 - Stage 4 - Liver Mets

Help my city grow:

http://goopsville.myminicity.com/ind/
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