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04-09-2008, 09:24 AM
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#1
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Senior Member
Join Date: Sep 2005
Posts: 556
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update on me
As some of you may remember I was diagnosed with recurence to mediastinal nodes in Aug 2007. I took Navelbine and Herceptin for 3 months and the mets disappeared. Actually in 4 weeks they almost diappeared but we continued for another 2 months. Then I had PET/CTscan for every two months to followup. My Nov 2007 scan showed NED and Jan 2008 scan showed very slight PET uptake in the same mediastinal nodes and March scan showed almost the same results as Jan. There is 6mm increase in one of the nodes since Nov 2007.
I have been continuing on just Herceptin since Nov. My Her2serum has been increasing since last month. I am taking it every month to understand better. It was stable around 7.5 till Feb and in March and April it became 9.4 and 10.9.
I have to decide now what is the next step. Have scan after two weeks.
I am confused what to do. I don't want to use up all my options, at the same time I don't want it to spread.
Any suggestions are appreciated.
Thanks,
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.
Last edited by Julie2; 04-09-2008 at 11:05 AM..
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04-09-2008, 10:09 AM
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#2
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Dear Julie -
Glad to see that the HER2 serum test is following what the scans say. But sorry the numbers are going up! 
It seems that the Herceptin has been doing its job to slow down the cancer, but, as you know, we often need to add another bullet to the gun.
Is the the tras-DM1 trial open near you? Look that up on the Clinical Trials forum and you will see that there are some good results with that. Or look at a way to shut down another HER pathway.
You could also try Xeloda (pill form), which has good synergy with Herceptin.
Does your med onc have a suggestion?
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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04-09-2008, 06:35 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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Julie
Nodes can be a pain in the a**, that said, sounds like you need a little boost added to the Herceptin. I know I have had Xeloda and Taxol/Avastin....both with the Herceptin...everytime I go off, the nodes come back and rear their ugly head...I am on a Taxol vacation right now for 6 weeks, then back on it again to keep the nodes in line.
__________________
"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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04-09-2008, 07:00 PM
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#4
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Senior Member
Join Date: Aug 2006
Location: Franklin, MA
Posts: 131
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I also had uptake in my mediastinum. Went on Navelbine and it disappeared. Went off of Navelbine and it came back to the same place. I went back on Navelbine and the cancer went away again (and has remained that way). Any reason why you can't try Navelbine again??
__________________
Diagnosed 10-03-2005 (34 wks pregnant, 38 yrs old)
Lumpectomy Nov-2005. 10/18 Lymph Nodes impacted
Mets to liver, spine & femurs (thus being stage IV right from the get-go)
ER-, PR-, HER2+
Taxol/Herceptin/Zometa started Dec-2005. 11 cycles of Taxol.
Sept-2006: PET/CT scan of mets to liver, spine and femurs - Stable. Activity in R breast & mediastinum (not seen in prior scans).
Navelbine (3 wks on/1 wk off) as of Oct--2006 & continued Herceptin (every 3 wks) & Zometa (every 6 wks)
Jan-2007: PET/CT Scan - Stable. Continued Nav. through March-2007, then Herc./Zom. only after that.
June-2007: PET/CT Scan - activity in mediastinum. Back on Navelbine as of July-2007.
Scanned Quarterly since Oct-2007 - a few small scares, but otherwise stable due to continuing weekly Navelbine, Herceptin and Quarterly Zometa.
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04-10-2008, 12:25 PM
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#5
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Senior Member
Join Date: Sep 2005
Posts: 556
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My onc suggests Navelbine and she says if we discontinue Navelbine we have to take off Navelbine from the list. I always had fever for two days on a weekly schedule with Navelbine. When I was on it, I really wanted to get over with it as quickly as possible. I am reallly hoping for some non-chemo option to keep this under control.
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.
Last edited by Julie2; 04-10-2008 at 07:18 PM..
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