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08-04-2006, 08:14 AM
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#1
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Senior Member
Join Date: Aug 2006
Location: St. Louis Mo
Posts: 57
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Herceptin Side Effects
Hi all, I am in my tenth month of herceptin treatment and am just now developing a side effect that does not seem to be listed. One day after my herceptin treatment, I get diarrhea and vomiting. So I have my treatment on Wed, then all night Thursday night I am sick and Friday I still don't feel well. Has anyone else experienced this side effect? Thanks
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08-04-2006, 12:10 PM
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#2
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Herceptin Accumalative?
Hi I'm in my 8th month and for the first time developed diarrhea half way through my last infusion.Have'nt had the vomiting thankfully.I was on the Genentech homepage and it did list these as remote side affects as not to many people had it,but definatly possible.It made me think it's having an accumalative effect as the longer I'm on it the more side effects I seem to get.You may find this does'nt occour with your next one.I'm still glad to be taking it though as I'm sure you are.
Tricia
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08-04-2006, 12:46 PM
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#3
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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I feel slightly nauseous the next day and get "down in the dumps". I have been on Herceptin for almost 14 months now.
Becky
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08-04-2006, 04:20 PM
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#4
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Senior Member
Join Date: Aug 2006
Location: St. Louis Mo
Posts: 57
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Thanks for the input. I hope we all get less side effects.
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08-04-2006, 05:26 PM
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#5
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Senior Member
Join Date: Jun 2006
Location: Grand Terrace, Southern California
Posts: 114
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With or without chemo
I am on herceptin without chemo for 5 weeks. I just started with diarrhea. My doctor is saying, "it isn't from herceptin."
__________________
04/97- breast bx. diagnosis breast cancer.
05/97- radical mastectomy; 5cm tumor & 11 lymph nodes.
10/97- City of Hope, high dose chemotherapy.
11/97- 36 radiation therapy.
01/98- NED; tamoxifen.
02/02- breast reconstruction.
08/04- recurrence; mets to rt lung; thoracentesis; femara.
09/04- thoracentesis; ER/PR +, Her2+++.
10/04- total abdominal hysterectomy.
02/06- mets to 9th rib; monthly zometa; arimidex.
06/06- medi port insert; weekly herceptin.
10/06- 3 weeks herceptin treatment.
02/07- mets to liver; arimidex
11/07-liver clear
02/08-chemo taxol/herceptin weekly treatment
12/08-taxol not working
01/09-navelbine/herceptin weelky
03/09-navelbine not working
04/09-xeloda/tykerb
09/09-30 radation to neck; xeloda/tykerb not working
11/09-Gemzar/herceptin weekly
04/10-tykerb/herceptin weekly
06/10-cancer spread to left lung;stop treatment; tap
07/10-right lung collasps; TDM1
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08-04-2006, 06:31 PM
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#6
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Koolbreeze, I called Genentech a few weeks ago with some questions. After we were done they offered to mail me some information on herceptin which I accepted.
Under "Infusion Reactions" consist of fever, chills, and on occasion included nausea, vomiting, pain (in some cases at tumor site), headache, dizziness, dyspnea, hypotension, rash & asthenia. It said those reactions are usually mild to moderate in severity.
Under "Adverse Reactions" it says the most common adverse reactions associated with HERCEPTIN use are fever, diarrhea, infections, chills, increased cough, headache, rash, & insomnia.
It goes on about their clinical trials and has a subject titled "Diarrhea". Of patients treated with HERCEPTIN as a single agent, 25% experience diarrhea. An increased incidence of diarrhea, primarily mild to moderate in severity, was observed in patients receiving herceptin in combination with chemotherapy.
There is too much information to post, but it does mention vomiting, & diarrhea. I know when I first started on herceptin and was really NEW to it...I kept getting nauseated. I felt really sick one night and called the nurse advice line like I was TOLD too. They decided after talking to me they got a doctor on the phone. I told him I felt really sick to my stomach and weak. He RASIED his voice at me & said, "Herceptin DOESN'T do that", and he HUNG up on me. Its really nice to be told it won't do that when you KNOW it did!
I started hercepting in Feb. 06 and I am still on it. I ALWAYS feel a "little" nauseated the first day I get herceptin. It never gets real bad...but its annoying. But if they give me tagament as a pre-med, or even in pill form it does help.
Everyone is different...what affects one person one way...might not another. And I have found with herceptin...many of the things that bothered me at first has gotten better. Its like the body adjust to it some.
The worse for me is the first day...due to nausea, and being extremely fatigued when I get home. But its so much better by the 2nd day, then its usually a breeze after that. (Knock wood!)
So anyway...don't believe the doctors if they tell you the nausea, vomiting, or diarrhea is NOT from the herceptin...because it says it happens right on Genentechs own information sheet. I get really fed-up with doctors over the years that tell me such and such medication WON'T and CAN'T cause that when it DOES. Argh! (They might mean well..but they aren't always right.)
Good luck...I hope things get better for you. Sometimes with herceptin it will...so hang in there.
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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08-04-2006, 07:52 PM
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#7
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Founder - HER2 Support Group
Join Date: Feb 2005
Location: Carlsbad, CA
Posts: 361
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Nausea ND HERCEPTIN
Tricia
Sometimes premeds are given prior to Herceptin infusion, such as Decadron and Benedryl that can also give you acicic stomach problems. I was given Zantac at times. Herceptin alone I found to be very tolerable. For me, a combo drug usualy gave me side effects.
HUGS,
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08-04-2006, 09:21 PM
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#8
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Member
Join Date: Aug 2006
Location: Illinoi
Posts: 10
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herceptin
It amazes me that the doctors think they are so sure of the side effects of herceptin when it hasn't been out here so long. They also don't think you can get cumulative effects from it. I do. I have been on Hercepting since March, but I just started getting Taxol 4 weeks ago. I am ER+ amplified by Fish and with the new Oncotype DX test that just came back. I started out with DCIS in my left breast, then needed a 2nd biopsy because there weren't clear margins. The 2nd biopsy showed a .5 centimeter portion of invasive cancer that ended up being explosive with it's aggression. I know the herceptin is saving our lives so the risks are worth it, but they say that it doesn't always work! They are telling me that I will only be on herceptin until December. Does that mean that my ER2 genes will start producing again? Do you know anyone who has stopped herceptin and is doing great?
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08-04-2006, 10:18 PM
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#9
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Senior Member
Join Date: Feb 2006
Posts: 1,014
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I had just started feeling decent again and went in yesterday for my Herceptin. Today, I have the awful sinus pressure, dizzyness, headaches and the stabbing pains in my stomach are back..I really believe it's the herceptin doing this, my scans last month were clean. My Oncologist told me "man you sure suffer from a lot of sinus problems". I told him it was the Herceptin, he looked at me like he had doubts. I told him to come on this board and read about all the side effects women were having on Herceptin. It's not as bad as the Taxotere but it's really hasn't been that easy of a drug for me, although I should just be glad I have it...sherryg683
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08-05-2006, 07:18 PM
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#10
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Senior Member
Join Date: Dec 2005
Location: Alexandria, VA
Posts: 1,055
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Hi you're aren't all crazy. Since being on herceptin and taxol only, I definately have diarrhea. I'm OK with it as immodium gives me breaks. My sinuses are also whacked, I go weeks without being able to hear.If this is the price, I'm OK. Best wishes, BB.
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08-05-2006, 07:43 PM
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#11
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Senior Member
Join Date: Apr 2006
Location: FLORIDA
Posts: 148
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I ALWAYS READ THAT A LOT OF PEOPLE HAVE SINUS PROBLEMS WHILE ON HERCEPTIN. I REMEMBER THINKING "OH THIS IS JUST GREAT" BECAUSE I HAVE HAD PROBLEMS WITH SINUS & RUNNING NOSE ALL MY LIFE AND THOUGHT HOW CAN IT GET ANY WORSE. WOULD YOU BELIEVE MY SINUS PROBLEMS HAVE ALMOST WENT AWAY AND I HARDLY EVER HAVE A RUNNY NOSE ANYMORE. I'M ON HERCEPTIN A LITTLE MORE THAN 2 MONTHS AND I REALLY DON'T HAVE ANY SYMPTOMS EXCEPT TIRING EASILY. MY ENERGY LEVEL IS BETTER THAN WHEN I DID A/C & TAXOTERE BUT I STILL FEEL TIRED ALL THE TIME. I'M NOT EVEN HAVING HOT FLASHES WITH TAMOXIFEN. I'M DOING SO WELL I JUST FELT I HAD TO TALK ABOUT IT BUT THEN IN THE BACK OF MY MIND I'M THINKING MAYBE I SHOULD KEEP QUIET AND HOPE IT CONTINUES. WHAT THE HECK, I MIGHT AS WELL BRAG AND ENJOY THE MOMENT. THANK GOD FOR NO BAD SIDE EFFECTS.
__________________
SHEILA (45)
09/2005--BREAST CANCER/8 POS NODES --A/C, MASTECTOMY,TAXOTERE, RADS, TAMOXIFEN,HERCEPTIN
02/2007--B/C METS TO OVARIES--HYSTERECTOMY, FASLODEX
12/2007--ENLARGING LYMPH NODES IN ABDOMEN--IXEMPRA, THEN TYKERB
08/2008--COLON TUMOR--A/C AGAIN,
12/2008--ABDOMEN TUMOR--AVASTIN/NAVELBINE FEMARA
05/2009--MET TO SPINE (L2) RADS
CURRENT TREATMENT
07/2009- START ZOMETA MONTHLY, XELODA & ABRAXANE......SURVIVING THE BEST I CAN
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08-06-2006, 08:04 AM
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#12
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Senior Member
Join Date: Feb 2005
Location: Wisconsin
Posts: 159
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Wasn't someone on this board making a list of Herceptin side effects? I think they were hoping to collect data to send to Genentech. Was I dreaming that? My side effects: (1) headaches unless I drink a ton of water for 24 to 48 hours after my triple dose, (2) sort of achy in a way that is different from any other achy feeling in my past, (3) low tolerance to any alcohol other than beer.
__________________
BLOG:
http://valleygirlvnp.blogspot.com/
Dx 11/04, Age 42, ER-/PR-, HER2+++
3 months weekly Herceptin, Taxol. Carboplatin
Significant tumor shrinkage
Mastectomy 3/05; Stage 3b, 9 cm tumor, 5/8+ nodes
3 more months weekly Herceptin, Taxol. Carboplatin
7/05 30 radiation treatments, IMRT planning approach
Started 1 year of Herceptin 9/05
9/06 Began quarterly triple doses Herceptin. Brain & breast MRIs semi annually.
* * * * * * * * * * * * * * * * * * * * * * * * * * *
6/08 Right breast, intraductal carcinoma, high nuclear grade associated with comedo necrosis; extensive diffusely involved the entire biopy specimen. ER+, PR-, Her2 unknown at this point, 07/08 mastectomy.
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08-13-2006, 11:21 AM
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#13
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Junior Member
Join Date: Aug 2006
Posts: 1
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herceptin side effects
I had my first herceptin on 24/7 for primary breast cancer. I had it on a monday, tuesday night/wed morning had these terrible stomach cramps, then vomiting and diarrhoea. The diarrhoea for a few days. My consultant did say when i see you again in 3 months you tell me the side effects! as they are still learning.
I went to a talk on herceptin and she mentioned vomiting and diarrhoea, but did say your body should become more tolerant although after reading some of these posts I'm not sure about that. I'm due my 2nd dose tomorrow, hoping for better results, especially as it is a slightly smaller dose.
Will let you know.
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08-13-2006, 01:29 PM
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#14
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Senior Member
Join Date: Aug 2006
Location: St. Louis Mo
Posts: 57
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Thanks
Thanks everyone for affirming that I am not crazy. Although, I am sorry anyone has to have negative side effects. I told my doctor about my vomiting and diarrhea and she said it is not the herceptin. Oh well, I guess they are still learning about it but I wish the docs would not dismiss us so readily. Take care all. Kool
__________________
Kool
DX 3/05
Stage IIB 1.3cm w/ lymph node involvement
ER+++PR+, HER2+++ G3
Surgery - Left mastectomy 4/05, Lymph node removal 5/05, breast expander removal 6/05, partial thyroidectomy 7/05, Right mastectomy 1/06
Post Menopausal due to hyserectomy 2/03 (took hormone replacement)
Treatment - A/C, Taxol and Herceptin, Herceptin only (finish 10/06), Arimidex daily.
Age 50
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08-13-2006, 06:27 PM
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#15
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Senior Member
Join Date: Sep 2005
Posts: 312
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My worst side effects (well there are three primary) are muscle aches either from the Herceptin or left over from the Taxotere. My sinus problems got worse with taxotere then better with Herceptin. Well, the worst one is the insomina. Last three week treatment was almost 5 weeks ago. I am still sleepless, and very tired and achy if I do much physical exertion.
But my hair is growing in better now, I think.
Janet
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08-13-2006, 06:59 PM
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#16
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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I seem to be having a problem with my stomach hurting as Sherry mentioned. I can't say for sure...but am having all kinds of PAINS in my stomach. I would think its a ulcer...but the pains are all over the place in there. The last couple days it has gotten bad. The pains are in *different* places each time in my stomach. Its really bothering me. Enough so that I decided to try taking some Protonix again. Just in case its all the stress and nerves from worrying about NOT being able to do rads.
I sure wish it would go away...it hurts.
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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08-14-2006, 08:45 AM
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#17
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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My side effects -- diarrhea the day after the infusion. Very tired the day after the infusion. My boss who also is getting herceptin finds that her belly becomes hard for a few days after Herceptin. I also have some hardness, but hers is worse. Doctors say it's not Herceptin. BS. They told me my mild nausea during radiation wasn't due to radiation either, although two other women I know had nausea during radiation.
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08-22-2006, 06:44 AM
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#18
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Member
Join Date: Jan 2006
Location: Kent in England
Posts: 12
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herceptin side effects but fear when stopped
I've had herceptin since last October, first weekly with taxotere chemo then this year three weekly. My onc will not have it that herceptin has side effects he says they are left over from taxotere. But diarrhea is definitely from herceptin, not bad but in middle of cycle get very sore from it. Hair growth slow to almost stop 2 1/2 inches only since January. Aching bones and joints, and a perpetually wet nose. Laughter or tears means a tap has turned on in my head and water runs, consequently wf my nose does dry a bit at night or under very dry conditions sort of crystals form in my nose and block it making nose very sore.
But as from 11th this month my heart is not performing well EF has gone down not certain to what but below 45% so herceptin was stopped by registrar, I have another heart echocardiogram on 4th September and booked to see onc 15th September in the meantime I'm in limbo, Herceptin I believe is the only drug that can keep the cancer away for me so the side effects have to be put up with but not having the herceptin is so very scary all is up in the air all over again.
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08-22-2006, 07:47 AM
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#19
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Senior Member
Join Date: Aug 2006
Location: St. Louis Mo
Posts: 57
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Aurey, I know what you mean. It is scary to think of not having the Herceptin even though we experience side effects from it. I am sorry that you are having heart troubles. I have seen posts that indicate stopping Herceptin for awhile helps the heart get back to normal and then sometimes they resume Herceptin. Maybe that will be the case for you.
I wish you the best. Hugs
__________________
Kool
DX 3/05
Stage IIB 1.3cm w/ lymph node involvement
ER+++PR+, HER2+++ G3
Surgery - Left mastectomy 4/05, Lymph node removal 5/05, breast expander removal 6/05, partial thyroidectomy 7/05, Right mastectomy 1/06
Post Menopausal due to hyserectomy 2/03 (took hormone replacement)
Treatment - A/C, Taxol and Herceptin, Herceptin only (finish 10/06), Arimidex daily.
Age 50
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