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Old 10-05-2008, 09:50 PM   #21
mamacze
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Question Has any Stage IV decided to go off Herceptin?
Hi Girls!
It has been quite awhile since I have logged on; but my oncologist wanted me to ask ... all of you who are Stage IV and NED what your treatment protocols are....I have been on Herceptin since April 2004. The tumors in my liver and lungs responded right away to the Herceptin and have never recurred since. Have any of you gone on a drug holiday? How many of your are using the Bayer serum test? If you are, did you have a baseline done? How often are you being scanned. Thank you all for your comments. Love Kim from CT
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Old 10-06-2008, 04:02 AM   #22
jhandley
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Smile 3 years and 1 week today
I have been on Herceptin for 3 years and 1 week. Side effects=sinus problems and a runny nose. Tired the day of infusion. I have it every 4 weeks..sometimes I let it go to 5 weeks if I have a cold etc. If you go to 6 weeks you get a reloading dose. I went to London and had the serum test 6 weeks after a dose and it was normal. I wanted to see if my levels went up at all.
I have been NED the whole time..had a 15 mm liver spot.
First dx in 2001.
What I would like to do is have the serum test so I can see if the levels start going up...but the oncs in Oz are not convinced it is reliable enough.

If I was able to access the test at a resonable price I maybe could go off herceptin and see what happened...

Cheers
jackie (down under)

PS: take olive leaf extract, reishi extract,omega 3, flaxseed and Q 10.
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Old 10-06-2008, 04:41 AM   #23
Sheila
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Joe
I just passed my 5 year herceptin Mark....Muga last week 63% !!!!!!!!!
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"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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Old 10-06-2008, 10:10 AM   #24
Kim in CA
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Oh my gosh, I just realized yesterday was my 7 year anniversary of being on Herceptin. Thought I would drop in to say that all is well, still alive and kickin! Also had Her2 Serum last month and still in normal range at 12.3.

Life is good! Kim
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Diag. Feb 1997 4.5cm IDC <10%ER+, PR-. 5 out of 36 nodes +. Mastectomy followed by 3 rounds Adriamycin/Cytoxin.


5/1997 Hi Dose Chemo w/ Stem cell rescue. Spent 4 weeks in isolation ward. Then 6 weeks radiation.

9/2001 widespread mets to liver. 8 mos Taxotere/Herceptin brought me almost to NED. Stop Taxotere & add Femara .

11/2002 liver resection to remove spot that turned out to be necrosis. Officially NED!

7/2003 Tumor markers rising add Xeloda Disastrous reaction, 8 days hospital, but tumor markers came back to normal!

June -Dec 2004 UW Vaccine Trial.

7/2005 MRI single 11mm brain met
8/2005 Gamma Knife.

Brain MRI @3 months NED!

2006-2011 brain/body still NED

8/04/11 Taking Herceptin break, will monitor with tumor markers.

6/20/12 Tumor markers begin to rise. CA15-3 is 31.3 and Her2 Serum is at 17.1 Decide to repeat in one month.

7/23/12 CA15-3 now 49.3
Her2 Serum 26.8

8/6/12 Back on Herceptin
CA15-3 now 76
Her2 Serum now 49

11/7/12 Add weekly Taxotere for 4 cycles

2/2013 Stopped Taxotere added Perjeta. MRI shows approx. 50% reduction liver mets. CA15-3 still elevated @ 55. Will continue on just Herceptin & Perjeta.

November 2014 Continuing on Herceptin, Perjeta, and
Femara indefinitely. Guess I'm NED again, but watching those tumor markers carefully!

Dec. 2015 PET scan reveals mass in perirectal area of abdomen.biopsy confirms. Still Her2+, but no longer ER+. Bye bye Femara

Jan 2016 Begin Kadcyla

March 2016 PET scan shows tumor now barely visible, still NED everywhere else.
2016/2017 continue Kadcyla

November 2017 brain MRI reveals small focus of T2 hyperintensity with possible 4mm enhancing nodule. Short term follow up MRI suggested. Stay tuned...
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Old 06-13-2012, 01:42 PM   #25
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Re: Need Long Term Herceptin Use Info
DX in 2006 Stage 4 with mets to liver. Had lumpectomy, chemo of taxotere, carboplatin, herceptin, on a WEEKLY basis instead of once every three weeks. Had radiation after chemo. Have been on Herceptin weekly since 2006. Last sign of cancer in early 2007. Herceptin will continue indefinitely unless MUGA shows changes. Problems with weak, splitting nails, systemic edema, sun sensitivity and this is new=itchy rash that is sparse on arms chest and occasionally chest, comes and goes. Finding returning to full time work difficult because of swelling and pain in hands and feet.
Labs are always good.
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