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12-24-2005, 10:00 AM
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#1
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Senior Member
Join Date: Dec 2005
Posts: 98
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First Time Mets
I was IIA and got off herceptin last August. I found out I have one met to bone, high on spinal column near brain. I'm supposed to start radiation next week but I'm so upset, it seems impossible. All the articles say I'll be dead in 2 to five years at most! If you have mets to bone could you tell me your story? Thank you in advance.
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12-24-2005, 10:42 AM
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#2
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Senior Member
Join Date: Sep 2005
Posts: 556
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Hi HavaJ,
Bone mets are very manageble, There are many people who live very long time with bone mets. Please don't get discouraged.
How did you find out your mets? Did you have any simptoms? or blood chemistry?
Julie
__________________
Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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12-24-2005, 01:11 PM
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#3
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Havaj
There are many on this site who have been dealing with bone mets for some time, with success....how did they find the mets, and did you have a brain MRI...if not, request one to clear all bases.
Sorry you are getting this news at the time of year that should be joyous and happy
We are all here for you whatever you need...with plenty of prayers that this will be a mangeable small area, with much success.
__________________
"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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12-29-2005, 05:12 AM
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#4
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Senior Member
Join Date: Nov 2004
Location: Indiana
Posts: 123
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Havaj
I have had bone mets now for 3 1/2 years. I had the one spot on my spine radiated and since then I have no pain. I can't even tell i have bone mets. My quality of life is good and I'm no where near death. I also have lung mets and to meet me you would never know I have anything wrong with me. The other day my Dr. said I have a postive engery around me and women with positive engery live a long time with these mets I have. It is scary the first time you are told you have mets. I usually have my pity party and then pull myself together and continue to live. I had walked 8 miles the day I found out I had mets. I thought they have to be wrong! Patty H
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12-29-2005, 03:52 PM
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#5
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A Living Legend
Join Date: Oct 2005
Posts: 235
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HI there, I have to agree with the positive energy. Although I do not have bone or organ involvement in 1998 I was diaganosed with a very agressive, fast moving ugly form of BC, radical mastectomy, removal of chest and pectoral muscles along with 16 out of 16 glands all positive with no clear margin and not eostrogen responsive, and I too was given 2 to 3 years at best, this phrase must be in their medical handbooks. I have had that many mets and NED's and as soon as it is confirmed to be mets I usually have a teary and then put makeup on and I also look like there is nothing wrong with me either. The positive part is that as long as there is some drug, any drug to keep me going until the tomorrows I am in for a chance. First mets I was planning my funeral again and almost cancelled my new trendy reading/sunglasses, replaced them twice since then. All of my relatives came up for a dinner party and you could have sworn the way the dining room was set us it could have passed for the last supper. Now I even forget to tell my outside family and friends that I have mets agaaaaaaaain. So the secret is to try and keep smiling, believe it or not it does get easier to accept when you tell your self that you have cancerbieties and still trying to find the right insulin dose. Hope this helps, there is always someone on here ready to offer support and it doesn';t matter how many times you may ask the same question, chances are that someone out there also needs to know.
Love & Hugs Lyn
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12-30-2005, 07:09 AM
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#6
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Senior Member
Join Date: Nov 2004
Location: Streetsboro, Ohio
Posts: 365
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When I was first diagnosed with bone mets I thought I wouldn't survive 6 months. It is now going on 2 years and I am still here living a good quality of life. I have been on several different chemo combinations but have not reached NED so far. This group of people have been my main support through the last 2 years. Just try to keep your hope alive. We are here for you. Blessings, Lu Ann.
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01-04-2006, 02:35 AM
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#7
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Guest
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Hi Havalj ,
You Are Er,pr Negative Or Er Pr Positive ?
You Finished One Year Of Herceptin ?
God Bless You
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