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Old 12-09-2008, 01:08 AM   #1
Valerie in Michigan
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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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Old 12-09-2008, 08:58 PM   #2
ElaineM
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Wink Herceptin More Than 2 Years?
I took Herceptin more than two years. I did not suffer any negative effects, but I did notice that I got more tired the longer I took it. I had regular Ecco cardiograms during the whole time. My Ecco results were always okay. I don't know if that was because of good genes or the fact that I took co enzyme Q 10 the whole time.
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Old 12-18-2008, 09:17 AM   #3
jones7676
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I have a friend who has been doing Herceptin for over 4 years and she has had no problems. She works full time and has a very active family.

Since she was stage 4 from the start, they (medical) believe it has been signicant in preventing a return of the disease.

Just an FYI.
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10/03 Radical Mastectomy 3 cm tumor - 1/17 Nodes Stage II B, Her 2 +++ ER-/PR- 11/03 4 AC 4 Taxol 12/05 Stage IV - Lung met , Bone mets - Carbo, Taxotere, Herceptin 9/06 - 2 cm brain tumor 10/06 - Tumor removal surgery - Herceptin Halted 12/06 gamma knife tumor base.1/07 Navelbine/Herceptin 4/07 Rads to R femur 5/07 Stereotactic - new 2 cm brain tumor 4/07 Start Xeloda 5/07 Tykerb added 7/07 Brain MRI clean 10/07 .055 cm brain met found. 12/07 Stereotactic -1 cm brain tumor Start Tykerb 11/07 Abraxane/Herceptin 5/08 Cisplatin, Gemcitabine/Herceptin 6/08 Stereotactic to 1cm 9/08 Stereotactic repeat (growth). 11/08 Pet Scan Good but new tiny met on L lung/dead Brain surgery (no cancer cells found/scar tissue) 1/09 Chemo restarted 2/09 Pet Scan Bad - R larger very active/active L active lymph nodes both sides of chest MRI- mets slight increase 2/09 Start Doxil/Tykerb Treatment
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Old 12-18-2008, 02:01 PM   #4
Chelee
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Hi Valerie, If you posted this on the "her2group" forum you would find lots of women that have been on herceptin for 2 years and some as long as 10. I would highly suggest you post this there and you will get many more replies to this.

Chelee
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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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