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Old 05-09-2006, 08:04 AM   #1
Lani
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Please post your two cents on Herceptin "side effects" real or perceived!

At the Genentech stockholders' meeting (I am not one) they were asked about their post-marketing surveillance and described their's (finding out what problems people were having with their drugs after clinical trials are over and they are being used by greater numbers of people--when more people take a drug, new problems are usually discovered which may be rare or only happen in a subgroup of patients). The Wall Street Journal had recently had an article on how drug companies often fail to do sufficient post-marketing surveillance as they are not motivated to do it (it doesn't increse "the bottom line" and may even hurt it) even though they are obliged by the FDA to do so.

Genentech answered that they have a postmarketing surveillance system which is an industry leader, setting an example for other companies. I am wondering if anyone on Herceptin has filled out any questionnaires for Genentech or if they are merely relying on the oncologists to pass on patients' complaints and problems. Particularly those who were on the trial--have you been contacted by Genentech.

I propose that those who post her (and the lurkers, too) put in their two cents worth about their symptoms AND particularly whether they are on every week or every three weeks as nothing has been published on this as this is one big experiment (a wonderfully successful one!)

I propose you list whether you are on it for early bc(what stage) or Stage IV, how long you have been on it, when symptoms started, what symptoms you had that you didn't have on chemo, how long since chemo ended you started(and what chemo regimen you had), whether you are getting anything concurrently with Herceptin vs Herceptin alone and if you had any other preexisting diseases or any other preexisting diseases for which you take regular or semiregular medication eg,heart problems, epilepsy, asthma, GI problems, etc--also whether the Herceptin problems caused you to stop for any period of time, take another medicine to reverse the problem Herceptin MAY have caused (eg. sleeping pills for insomnia, stomach pills for nausea, heart pills for heart failure, etc)

Feel free to list minor complaints such as nail cracking, skin cracking, nose dryness or nosebleeds, dry eyes,change in hair, and gas as well as nausea, diarrhea , shortness of breath or air hunger (the feeling of having difficulty being satisfied by the amount of air you inhale), swelling of hands and feet(change in ring size), minor sun sensitivity, rib pain, back pain or other bone pain, joint pain in hands and/or feet or other joint pain, etc. Please also list things under questionable such as weight gain, changes in vision or teeth, improvement or worsening of neurologic symptoms( whether brought on previously by chemo or otherwise), changes of mood, difficulty finding words, increased hot flashes etc. Please alsor remember to list your ER status and whether you are pre/post menopausal and if you are on Lupron shots and/or antihormonals concurrently with herceptin. If you are post-menopausal it would help to know for how long (ie,whether you were likely to be having hot flashes anyway etc)

I would hope that this "unscientific" study would be good enough to submit to Genentech so they can cross-check it with their industry-leading postmarketing surveillance. THEY HAVE A GREAT DRUG. Let's see if we can help them have GREAT INFORMATION available to those taking the drug as to what (hopefully) little problems they might expect. Obviously this is a scewed study, as those with no complaints won't reply (although I encourage them to!)

Thanking everyone who participates! (Please feel free to add new questions if I am certain I have forgotten some and certainly new symptoms or problems as I am sure there are many not listed)

Lani
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Old 05-09-2006, 08:07 AM   #2
Lani
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Ps

please remember to post whether you are on weekly or every three weeks treatment with Herceptin

THANKS AGAIN,
LANI
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Old 05-09-2006, 08:48 AM   #3
anne
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Hi Lani,
My mom had a stroke last week. She did have mild HTN and elevated cholesterol. But beside that all tests were neg. We are wondering if Herceptin (she had 52 weekly txs) had anything to do with it. Still haven't had time to research it. All I remember is the onc said that it does affect the red blood cells, so it could have affected her platelets also.
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Old 05-09-2006, 09:22 AM   #4
Lani
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Thanks so much for sharing that information!

MY HEART TRULY DOES GO OUT TO YOU --Sorry to seem so heartless and uncaring in asking more questions, but, once life settles down we would appreciate if you could give us more information. I know you must be and will continue to be busy and preoccupied, but when you have time could you let us know her age, whether she was on any other medications, had any other health problems which might have predisposed her, how long since her herceptin treatments it happened. Breast cancer, and cancer in general, is associated with an increased risk of clots. Was her stroke one due to bleeding or due to clots? Was she on tamoxifen or AIs? . No need to get back to us until she is not only stable(but hopefully improving) and YOUR life calms down. Feel free to get back in months if necessary.

All the best to you and your Mom. She is lucky to have you!

Lani
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Old 05-09-2006, 10:41 AM   #5
kimber
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I started on every three weeks then switched to weekly due to MUGA. My hair grew very slow while on Herceptin. I had headaches, painful knee joints, thin and cracking nails, leg and foot cramps and very bad memory issues. I knew what I wanted to say, but could not say it. Also, I started to stutter words. I have been off Herceptin for a couple months. My hair is starting to grow at a good clip again, cramps are going away, nails - still an issue as well as the memory and word issues. I quit the Herceptin at 7 months. I do not feel comfortable with the long term effects of the drug. I am stage 2A. ER+, PR+ HER2+++,double mastectomy, 4 dose dense AC- 12 weekly Taxol, 7 months Herceptin and will do 5 years of Tamoxifen. - kim
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Old 05-09-2006, 11:09 AM   #6
Lani
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Kim, thanks for the reply

how long after the chemo did you do your herceptin? Did the memory issues come on only after Herceptin was started? Thanks, Lani
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Old 09-21-2006, 09:02 AM   #7
Carol E
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Hi,
I am new to this forum, but I just wanted to say that I was on Herceptin for 5 months, first four months every week, last month every 3 weeks, dbl dose, had runny nose, legs ache, and some rib pain (actually a lot) but it really wasn't to bad,
but unfortunately it didn't help me much, now I will be going on Taxol and Avestin, could someone please tell me your experience with these chemo's, thank you very much,
Carol E
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Old 09-20-2007, 10:35 AM   #8
MAB1943
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I am on 3 week infusions of herceptin, I have the following side effects
Ears clogged, memory, bones ache, tired, insomnia or restless sleeping,and very slight nausea.
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Old 09-27-2007, 05:50 PM   #9
Paris
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Hi Andi, Thanks for your kind reply. You are inspiring! If it is the herceptin that's making me tired then okay I'll deal with it. I definitely appreciate life alot more these days even with the fatigue! I grew up on Long Island. Where did you live?

MAB I didn't have any neuropathy. The fatigue has always been my problem. Otherwise chemo wasn't too bad.

Jamie
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Diagnosed 11/06 IDC left breast Stage 1, High Grade w/extensive High Grade DCIS. Right breast extensive hyperplasia w/calcifications.
ER-/PR- HER2+++
Bi-lateral masectomy 12/15/06 w/expanders
SNB Node Negative
Chemo Taxotere, Cytoxan 2/07-4/07
Herceptin Started 5/07
Exchange surgery 6/15/07
Herceptin stopped after 12 rounds due to herceptin induced cardiomyopathy
On heart meds 'til?
Age 40 at diagnosis
Cancer may have been a defining moment but it does not define me!
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Old 09-27-2007, 05:54 PM   #10
BonnieR
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MAB, I have neuropathy from something I'm taking (THC). It is intermittent. Worse right after the infusion. I take 10 Gm three times a day of Glutamine. You mix the powder with juice or what have you.....
Seems to help.
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Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 10-10-2007, 07:10 AM   #11
Paris
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Question

Hi DHealey-I'm curious why your onc. said you'd never be cured since you were HER2+. While I know in reality breast cancer can't be completely cured why was the HER2 such a negative? On the one hand HER2 has more aggressive characteristics but you hear people referring to herceptin as the "magic bullet". I am er/pr- and I've actually had people tell me that I should feel happy I don't have to do hormone therapy or worry about my ovaries.

Jamie
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Diagnosed 11/06 IDC left breast Stage 1, High Grade w/extensive High Grade DCIS. Right breast extensive hyperplasia w/calcifications.
ER-/PR- HER2+++
Bi-lateral masectomy 12/15/06 w/expanders
SNB Node Negative
Chemo Taxotere, Cytoxan 2/07-4/07
Herceptin Started 5/07
Exchange surgery 6/15/07
Herceptin stopped after 12 rounds due to herceptin induced cardiomyopathy
On heart meds 'til?
Age 40 at diagnosis
Cancer may have been a defining moment but it does not define me!
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Old 09-28-2007, 02:08 PM   #12
Andrea Barnett Budin
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Cool Long Island

Jamie, Any questions you have shoot them over to me, as the poster child for Vit H, I have accumulated a lot of knowledge, hanging out in chemo rooms for the last 12 yrs.

I grew up in Rockville Centre. Got married, lived in Manhattan (22nd & 2nd), then an apartment in Lynbook, till we could afford (or stretch to afford a house). Had to go way out to Dix Hills to achieve that. Lived there 29 yrs raising my babes and my Silky Terriers. Now have 2 Maltese bros that we rescued 4 yrs ago.

Moved to Manhasset as I was initially dx in '95. That was interesting. Then moved full time to our part time town Boca. Moved from NY and from southern Boca large apartment to northern Boca house -- so I could take all my *stuff*. That move was just after finishing 9 mnths of Taxotere. That was impossible. It's amazing what you can do when you have to. And here I be. Or, as Flori, morning glory, says -- HERE AM I!

With loving energy going out to my Sisters and Bros... 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 10-14-2007, 09:01 PM   #13
futurefocus
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Andi,
You are an inspiration to me....I imagine you have gained a great deal of knowledge over the last 12 yrs. I noticed you are "borerline ER & PR"...Did they put you into menopause? My cycles returned after chemo and it scares me. In days past they couldn't determine the specificities of the disease and the chemo or the onc automatically put BC woman into menoopause...Why don't they do this today? ANy help is appreciated.
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Old 05-09-2006, 01:27 PM   #14
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I am stage IV, started Hercepin in December of this year and will be on it "indefinately" whatever that means. Sinus issues and headaches are the main thing for me. I am also cloudy headed and my thinking is not as clear as it use to be. I also get pretty bad gas after doing my treatments. I have been off regular chemo for a month now and thought that my rib pains would go away but they haven't. I think it's from the Herceptin, I've had scans that said I am clean. Another thing I personally hate, although it's minimal is the smell. After I get my treatment, I can smell the drug coming from my pores when I sweat and also when I urinate. I know this is nothing major but it reminds me of the chemicals going through my body and its not pleasant...sherryg683
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Old 04-12-2007, 02:38 AM   #15
Caroline UK
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Sherri, when I was having the chemo drug epirubicin I experienced the same thing and like you, I absolutely hated that side effect. I just wanted those horrible chemicals out of my body; it felt like an invasion, even though I knew it might be saving my life.

I was advised by an oncology nurse, on a charity helpline here in the UK (CancerBackup), to try sucking strong peppermint sweets ('candy' I think you call it!) WHILE the drug is being infused. To my amazement it worked very well. The only trouble is that now, 8 months after chemo finished, I can't stand peppermint! But that's fine. I don't know if this will help with Herceptin. Good luck with it, thinking of you.
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Diag. March 10th 2006, aged 46.
Invasive ductal carcinoma, 2cm + multifocal. Stage 2, Grade 3
HER2+++, ER+/PR+
Right mast. May 2006. 6 of 20 nodes positive
FEC x 4, taxotere x 4; port implanted after 6 cycles
Rads x 25
1 year of Herceptin ended Nov 07.
Arimidex 5 years

Considering reconstruction, maybe soon...
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Old 05-09-2006, 01:55 PM   #16
nancymarie
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My symptoms with Herceptin

I am only on Herceptin right now so no other chemotherapy or other treatment is causing these problems.

1. Very bad sinus issues: Dry nose, bleeding nose, congestion or nose dripping - I can hardly breathe at night. My doctor subscribed Allegra and it helped a little.

2. I feel like my energy level is not like it used to be.

3. Weight gain. It seems like since I have been on Herceptin, I have gained about 40 lbs. I started Herceptin on 12/9/05 for 1 year at my request.
I can't blame Herceptin totally for the weight gain, but it seems like I also feel more like a slug and don't exercise as much as I used too, etc. I used to be able to wake up and exercise right away. I have to give myself now at least 30 minutes for my nose to clear up, etc. I also tend to overeat when I am "not feeling that great" and this is how I feel on Herceptin.

4. Pimples. Although they were worse during the first couple of infusions.

5. Mouth Sores. I got them a couple of times (on my inner cheeks and inside my lower lip area).

6. Not thinking as clearly as I used to.

7. Acid reflux.

8. Blurred vision or dry eyes. I had lasik done, but it seems like my dry eye problem is worse now and I even had blurry vision the other day.

I think Herceptin is a miracle drug, but there are alot of side effects to cope with.

I get my Herceptin treatments every 3 weeks - for 30 minutes each infusion.

***IDC, Stage IIB, Her2/NEU 3+, ER/PR - and I requested Herceptin after reading the results of the trials***

Age 48

My last chemo was in 2003. My last menstrual cycle was in 2002 when I started AC so that put me into menopause.

and I'm also a Genentech stock holder!

Last edited by nancymarie; 05-10-2006 at 11:06 AM..
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Old 05-09-2006, 03:09 PM   #17
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Herceptin

When diagnosed in 12/04 at stage 2B I asked about Herceptin was told I would not get it it was only for metastatic patients. I was slated for dose dense 4 A/C 4 Taxol by the 2nd Taxol I had neuropathy, the last two doses were administered on a weekly basis at the same time Herceptin was approved and added to my final Taxol.

I continued to receive it for approx. a month on a weekly basis (w/ no decadron or benadryl) and then was switched to every 3 weeks. I did radiation while on Herceptin and then went off for 2 months due to lower MUGA score (not sure if that was really the case because they had new machine and lost first results then repeated test not enough nuclear med. left then did 3rd test next day)

Waited 4 weeks no Herceptin repeated test and MUGA was fine been on consistenly ever since. About 3 months ago I started having muscle pains & cramps in the legs & some weakness in leg muscles.

FYI I asked 2 different onc. about a 2nd year of Herceptin both of which said, not recommend because frankly we don't know what the long term effects are.

The only other med. I was on for about 2 yrs. was Allegra & Singular both of which I discontinued upon diagnosis. I have resumed both this month for sinusitis/rhinitus problems.


Mary
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Old 05-09-2006, 04:44 PM   #18
IRENE FROM TAMPA
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To Lani

I am so glad you thought of this . In fact I just asked some questions this morning myself due to return of SEVERE leg/hand cramping.

I am ER/PR NEG, HER2 3+
DIAG. BREAST CANCER - 1996
STARTED ON HERCEPTIN IN 1999 AFTER RECURRENCE
ON WEEKLY DOSES UNTIL 2005
STARTED EXPERIENCING LEG/HAND (SEVERELY) AROUND 2003-2004
WAS TAKEN OFF WHEN STARTED ON ABRAXANE
COMPLAINED TO MY ONC. ABOUT IT SINCE I WAS ONLY ON THE HERCEPTIN
THOUGHT IT COULD BE THAT. SHE HAD NEVER HEARD ANYONE COMPLAIN ABOUT THESE SYMTHOMS SO THOUHGT IT COULD BE SOMETHING ELSE.

CRAMPING COMPLETELY STOPPED ABOUT A MONTH AFTER STOPPING.

JUST STARTED BACK UP AGAIN IN APRIL WITH WEEKLY TREATMENTS IN COMBO WITH TAXOL/CARBOPLATIN.

THEY ARE NOT AS SEVERE YET BUT THEY HAVE STARTED IN MY HANDS AGAIN.

I WAS JUST THINKING TO CALL GENETECH TO ASK THIS VERY QUESTION.
IF ANYONE ELSE HAS THIS PARTICULAR PROBLEM. MY CONCERN OF COURSE IS WITH THE HEART.

LET ME KNOW HOW THIS TURNS OUT.
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1996 - INFILT DUCTAL CAR.W/ LYMPH NODE INVOLVEMENT. ADRIA/CYTOXIN/5FU
1999 - RECURR. TO AUXILA AND 2 TUMORS IN LIVER
TREAT: STEM CELL REPLACEMENT/HERCEPTIN.
2002 - RECUR TO LIVER
TREAT: NAVELBINE, THEN GEMZAR, THEN XELODA.
2004 - TUMORS STILL IN LIVER
TREAT: RFA TO LIVER
STABLE UNTIL
2004 - TUMOR PROGRESSION IN LIVER.
TREAT: RESECT HALF OF LIVER.
2005 - RECURR TO LYMPH NODE OUTSIDE OF LIVER.
TREAT: TAXOL/CARPO/HERCEPTIN. FAILED ON
THIS TRIO. STARTED ON ABRAXANE.
2006 - PROGRESS WITH 2ND TUMOR GROWTH.
TREAT: AUG. BEGAN ON TYKERB/XELODA
TRIAL. CONSIDERED STABLE TO DATE.
2007 - TAKEN OFF OF TYKERB/XELODA TRIAL DUE TO
PROGRESS STARTING TYKERB/AVASTIN.
NOV 2007 - SCANS SHOW PROGRESS TUMOR GROWTH
IN ABDOM. AND TWO NEW TUMORS IN NECK AREA.
BEGAN HERCEPTIN/AVASTIN/TAXOTERE
Feb 08 - Ixempra/Xeloda
June 08 - Her/DM1 trial

"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY."
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Old 11-15-2010, 08:34 PM   #19
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Re: My symptoms with Herceptin

Nancy- I am just diagnosed and trying to learn all I can. Can you explain to me why you are on Herceptin now if you were diagnosed so long ago? Also, have you had any mets since your initial treatment ended? Since you have several year experience with this I will take any information/advise you have to offer. pennington.tracy@menlolog.com. Thank you!
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Old 11-16-2010, 07:27 AM   #20
Mary L
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Re: Please post your two cents on Herceptin "side effects" real or perceived!

I have been off it for 3 years last month.
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Mary L from PA Diag: Oct 2003 w/6mm mass, IDC grade III ductal carcinoma in-situ, IBC stage IIIB. tx A/C followed by Taxotere(only able to have 2 tx, allergic), mastectomy, 3 0ut of 7 positive nodes. 35 rads. Recurrence 9 months later, skin mets to mastectomy site. Tx Carboplatin/Herceptin. Stayed on Herceptin almost 5 years, had 3 more recurrences when I had to stop Herceptin due to my ejection fraction getting too low. Herceptin stopped and ned 3 years in Oct. 2010.
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