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Old 09-02-2007, 06:15 AM   #1
Alice F
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Delayed herceptin side effect?
I started herceptin back in Nov 06 with taxol. My treatments were 12 weekly-finished in Feb. Continued weekly until I finished with rads in June then I switched to every three weeks. I had no side effects at all but last thurs I awoke from sleep in excruciating middle back pain. I read that back pain can be a herceptin side effect. But could it be possible to get this side effect after all this time? My local onc is sending me for a chest and spine xray. He doesn't think it a metastises since I'm still receiving herceptin & tamoxifen and he said bone cancer usually comes on slowly and not so hard hitting all at once. Have any of you had a similar experience? I'd greatly appreciate you replies.

Alice F
dx 8-06
stage 2
triple pos
4a/c
12 Taxol & herceptin
Bilat mast w/ node dissection
all 12 nodes clear
tamoxifen started in April
herceptin to finish in Nov 97
reconstruction in May 08
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Old 09-02-2007, 08:34 AM   #2
tricia keegan
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Alice I just replied to your post on Komen, please see my reply there.
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Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 09-02-2007, 11:33 AM   #3
dorinda
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what is the web site for the komen. is it a support group
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nov 2006 dx. with bc. 3 tumors removed from left breast lumpectomy done. her2 postive er+pr-. scans showed extensive spine mets(to many to count) ,3 tumors on left rib,one tumor on skull and 3 tumors on liver. stage IV from get go. dec.2006 started chemo taxol and herceptine wkly. zometa monthly. rescanned in march 2007, liver tumors shrinking a little. bones to early to tell but pain is gone in my back. rescanned in june 2007. liver mets gone, bone scan looking better but still alot in my spine. still on taxol and herceptine. zometa monthly. rescanned in august due to ca 2729 going up. liver still good , mets in ribs and skull gone but multiple areas still on lumbar and sacrum. mri of brain august 07 negative for mets.I AM BELIEVLING GOD FOR MY HEALING.
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Old 09-02-2007, 11:50 AM   #4
Andrea Barnett Budin
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Bad Back Pain
Alice, That side effect can come from Aranesp or the like. Did you recently have one of those injections? You can read my experience w/Herceptin in my signature. Been on it since '98 -- almost 9 yrs. Fatigue, which may or may not be from Vit H, could be leftover shock and awe chemo or just me getting older, is my major side effect from Herceptin.

It keeps me well and stable, and I can live w/pretty good QOL on it. Let us know how you do, please. We all care and want to help if we can.

It's so hard not to panic with new symptoms when you are in our position, but once I can find logical explanations I'm good. When I had the major pain you refer to (from my neck down to the base of my spine) my husband mentioned about Procrit (which was the red bld booster I was then on) and it's possible side effects. I thought I was dying for sure, then I settled down. Hope this is all it is w/you.
Andi

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'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 09-02-2007, 01:20 PM   #5
tricia keegan
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Dorinda!
It's www.komen.org and just click on message boards, I found it when first dx a couple of years ago and still try to find the time to post there as well as here!
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Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 09-02-2007, 06:11 PM   #6
dorinda
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thanks tricia will check it out.
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nov 2006 dx. with bc. 3 tumors removed from left breast lumpectomy done. her2 postive er+pr-. scans showed extensive spine mets(to many to count) ,3 tumors on left rib,one tumor on skull and 3 tumors on liver. stage IV from get go. dec.2006 started chemo taxol and herceptine wkly. zometa monthly. rescanned in march 2007, liver tumors shrinking a little. bones to early to tell but pain is gone in my back. rescanned in june 2007. liver mets gone, bone scan looking better but still alot in my spine. still on taxol and herceptine. zometa monthly. rescanned in august due to ca 2729 going up. liver still good , mets in ribs and skull gone but multiple areas still on lumbar and sacrum. mri of brain august 07 negative for mets.I AM BELIEVLING GOD FOR MY HEALING.
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