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01-30-2007, 12:45 PM
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#1
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Senior Member
Join Date: Feb 2006
Posts: 1,014
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Bad reaction to herceptin..help please?
I went in yesterday to get my normal weekly dose of Herceptin and as soon as I got up from the chair, my right arm started hurting terribly, the side of surgery (I have a port on my left side). Then I got these awful shooting pains through my back. I have to tell you I was in terrible pain, My oncologist said that I was having a bad reaction to the Herceptin and that it can happen at any time. To take benedryl and tylenol. I've been on Herceptin for 15 months now with only the headache problems, never had this type of reaction. Then later that night I started running fever of about 102 and the body aches were all over. I'm still that way today, fever comes in and out, I still ache terribly. So now I don't know if I have the actual flu or just a bad reaction to the herceptin. I haven't gone back to the doctor because I really don't feel like getting out the bed. Just wanting to know if any of you have ever had this, especially the arm totally going out..I can barely lift my right arm. At what point should I drag my butt out of bed and go to the ER. I'm just really kind of confused, I hope like heck this is not how I'm going to start reacting to the herceptin. I even asked if they gave me the 3 week dose by mistake and they said no...my normal dose. Sorry if I'm rambling, I feel like that bus has totally ran over me, backed up and come at me again...sherryg683
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Sherry
Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year
Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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01-30-2007, 12:50 PM
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#2
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Senior Member
Join Date: Mar 2006
Location: Minnesota
Posts: 80
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Hi Sherry
I have not had that reaction but did just want to offer support. This crazy disease has us coming and going doesnt it?
If it would ease your mind I say go to the doc or call your onc nurse maybe?
Bobbi
__________________
Diagnosed 10-18-05 found during annual mamogram
Left mastectomy 10-27-05.
Sentinal node biopsy-node negative
IDC Grade 3 of 3
Tumor 2 cm margins clear
HER-2/neu 3+++
Er Pr +
Began chemo/AC every 3 weeks 12-6-05 followed by Taxol and weekly Hercpetin (Herceptin through June 2007)
Right prophlyactic mastectomy June 2006 with expanders. Due to have exchange surgery sometime end of May 2007.
Exchange surgery completed June 2007 with saline implants and nipples. Darned left implant is lopsided to the left due to the wrongly formed pocket and my wrongly formed chest wall!
Switched from Tamoxifen to Armidex in May due to menopause.
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01-30-2007, 01:05 PM
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#3
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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WOW, Sherry
You sound like the way Taxotere made me feel. Absolutely like a bus had body contact with me. And add in a few baseball bats!
In all my five years on Herceptin, I have not had anything close to what you describe. Never heard of a Herceptin reaction like you report. But, if your onc is familiar with such reactions, then they must occur. Have you not been taking any premeds?? Guess you will have to try that next week and see what happens - not that you want to be any more of a human Guinea Pig, but you may have to experiment a little and try to isolate the problem.
Let us know what makes you feel better. Besides a couple of Hot Toddies!
__________________
"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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01-30-2007, 04:27 PM
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#4
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Senior Member
Join Date: May 2006
Location: northshore suburb of chicago
Posts: 1,093
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Could something be wrong with the port? If it were me I would talk to the onc or go see him again to ease your mind. Taking action always helps us feel like we are doing something. Please keep us posted on what happens and I am praying for a simple answer for you.
__________________
~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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01-30-2007, 05:11 PM
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#5
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Guest
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Call your doctor or get to ER
I've never had a reaction anything similar to this, but if I had your reaction I would have called my doctor immediately, particularly since you are running a fever of 102. Make that call.
Good luck.
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01-30-2007, 05:38 PM
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#6
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Senior Member
Join Date: Feb 2006
Posts: 1,014
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Thanks all, I am feeling a little better...I really think I have the flu, I sure am hoping I'm not developing some allergic reaction to the herceptin. I guess I'll find out next week. I was on vacation last week and there was a flu epidemic going around where we were at, so I probably brought it home with me. Although, I did read at the Herceptin website that some side effects may be flu like symptoms, fever, chills, body aches...lovely..sherry
__________________
Sherry
Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year
Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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01-30-2007, 09:55 PM
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#7
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Sherry,
It sounds weird for me to say that I hope you have the flu, but, I hope that's what it is. I remember my arm feeling achey a couple of times during herceptin, but no real pain. I hope all goes well next week.
Hugs and Prayers,
Lexi
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02-03-2007, 08:50 AM
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#8
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Senior Member
Join Date: Jan 2007
Location: I live in south Carolins, Anderson.
Posts: 40
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herceptin
hi, Sherry,
First, I haven't had a reaction like that, but with eating after the chemo, and leg pain , and then during treatment yesterday I had pain near my bladder, but it is all worrisome, so I understand. Always holler to the onc. nurse and they will get your dr., or at home call the onc. Mine calls right back with answers aas to what to do. Don't carry the burden alone.
Hope you have a good week and continue to feel batter, we have to do what we can to help in this fight, but I have had 3 weeks of being sick from what I ate after the treatment , but my labs last week were good and finally after switching from pepcid to mylanta, I able to eat. Thank God!
warm wishes,
kathy
tthis is my first month on this.
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