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12-18-2008, 08:11 PM
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#1
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Member
Join Date: Apr 2008
Location: Huntington Woods, MI
Posts: 11
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Herceptin More Than 2 Years?
Any on this forum who have been taking Herceptin more than 2 years? Have you experienced any adverse side effects? Have any of you long term Herceptin users changed receptor status?
Valerie in Michigan
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12-18-2008, 08:31 PM
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#2
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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Valerie,
The length of time that a patient receives Herceptin is based on staging. If you are stage I or II then the accepted protocol is 1 year anthough some oncologists may prefer the protocol used in the HERA trials - 2 years.
Many patients who are Stage III & IV have been on Herceptin for more than 2 years.
Christine had been on it for almost 9 years. There are really no known long term side effects to Herceptin although some patients may see a gradual decline in their heart's ejection factor. This is usually treated by discontinuing Herceptin for a period of time to enable the ejection factor to bounce back, but this is rare.
At San Antonio, Saturday night they showed a slide of a study that showed that 20% of bc patients change HER2 status. Either from + to - or from - to +. They did not differientiate.
Regards
Joe
__________________
A Proud webmaster to the internet's most informed, educated, COMPASSIONATE and caring group of breast cancer survivors.
Illegitimi non carborundum
My Album
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12-20-2008, 11:40 PM
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#3
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Bumping this up as I know there are lots of other her2 gals that have been on herceptin two yrs and longer. Must be the holidays keeping them busy. They ought to check in sometime soon. 
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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12-21-2008, 06:55 AM
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#4
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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I have started my 6th year of Herceptin recently....I am stage IV, still no problems and my muga 4 mos. ago was great.
__________________
"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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12-22-2008, 09:30 PM
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#5
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Senior Member
Join Date: Sep 2005
Location: Madison, Connecticut
Posts: 638
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Hi Val - How long have you been on?
I have been on Herceptin since 2004, in March it will be 5 years for me. Side effects? Stiff joints, runny nose, nothing major. My cardiologist says as long as I exercise every day my heart should be fine and so far he is right. I am still NED so I don't have a visible tumor to test to see if Her2 reactivity has changed. How about you?
Love Kim from CT
__________________
2001 - Stage 0, lumpectomy, radiation, tamoxifen
2004 - Stage 4, mets to 4 lobes of lungs and liver, lumpectomy, er/pr -, her2 neu+++, Herceptin and Navelbine then Herceptin only.
2005 - Breast Ca vaccinations with the Tumor Vaccine Group in Seattle
2011 - Still Herceptin only and NED
2011, June - STOPPED Herceptin and kicked up my heels!
2012, February - 1 small tumor came back to haunt me in my lungs - back on Herceptin only, tumor stable.
2015, November - tumor on lungs removed (Segmentectomy), back on Herceptin only
Received U of W vaccine clinical "booster" Vaccine
2022 On Herceptin and NED continues - WOOT WOOT!
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01-09-2009, 10:33 AM
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#6
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Member
Join Date: Jun 2008
Location: Fort Worth, Texas
Posts: 9
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I was so glad to s ee this post before Christmas, have been gone so am just now responding. I am starting my 3rd year on Herceptin and want to continu3. I have had a very slow ejection reduction and have had just alittle flu-like symtpoms the day or two after treatment. I had only known one other very pro-active survivor who was doing this and had thought maybe I was being too paranoid. This is my 2nd time to have BC( 1st- 1992 estronge postive, 2nd 2006- HR2. ) I was node negative this 2nd time, but after having this 2nd go thru am being very aggressisve, not to have again!! My Dr. is supportive, so I have felt good about this and luckily my insurance has continued to pay without protest. Has anyone had problems with insurance on this?
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01-09-2009, 11:28 AM
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#7
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Member
Join Date: Apr 2008
Location: Huntington Woods, MI
Posts: 11
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Hi Sheila,
Just wondering from reading your bio, did you only have superclavical node involvement and no organ mets? What is the current status of your SN?
Looks like you have taken Herceptin continuously since 9/03. Does your onc. intend to continue indefinitely? Do you still have your implant? Who is your onc. and hospital?
I am beginning my 3rd year on Herceptin. Was diagnosed with inflammatory breast cancer 1/07 and started TCH immediately and had a complete response. I was NED at the third cycle mark and completed 6 cycles total. Decided to postpone the surgery and radiation. Stopped Herceptin for 6 weeks then. When decision was made to proceed without surgery or radiation, my onc. convinced me to start back on Herceptin and todate he feels I should continue indefinitely. I am still NED, being scanned with US, MRI and PET/CT bi-monthly rotating. Each scan is better than the last, with even my scar tissue regressing. I have had my entire treatment at M.D. Anderson/IBC Clinic.
So far my heart is functioning optimally, with no EF problems. I learned through a consult with one of the top cardiologists specializing in chemo toxicity that a blood marker test called a BNP can be done very frequently to monitor heart function problems, eliminating the need for more frequent mugas and cardiac ultrasounds. He also indicated that the muga was not as detailed regarding chemo related problems at the cardiac ultrasound.
My concerns long term lie with cardiac problems obviously, but also I am quite concerned that long term use might lead to Her2+ receptor status change to -. I have also been told by a leading oncologist that if Herceptin proved to be effective initially, then should I stop it and reoccur, that starting back on it again would have the same effectiveness.
I am uncertain as to how effective Herceptin continues to be the longer it is given? There are no tests to determine this. I do however feel certain my immune system is responding each time I get an infusion, particularly with respect to the 5% mouse antibody. This leads me to feel that eventually the body will find a way around it.
Would encourage other thoughts on this matter !
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