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Old 04-11-2010, 11:59 AM   #481
harrie
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Re: Please post your two cents on Herceptin "side effects" real or perceived!

Sandi,
Right after chemo my nails turned very dark and some were loose, etc. Went to the nail salon figuring they were experienced and could offer suggestions. Right away they said it was a fungus. (sure did look like it) Contacted my onc and he said it was NOT a fungus and NOT to use anti-fungal meds, but side effects from the chemo and to put tea tree oil on it. Sure enough it cleared up.
Hair: mine grew back slowly at first and after about 6 months, took off like a week!!
Hope this helps.
Maryanne
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*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 04-11-2010, 04:57 PM   #482
sandyinde
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Smile Re: Please post your two cents on Herceptin "side effects" real or perceived!

Thank you Harrie, I'll try to find some tea tree oil!
Sandy
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Diagnosed 5/14/09; stage 0
Mastectomy 6/4/09
upgraded to Stage 1A, receptors negative; HER2 positive
started chemo 7/21/09 TCH 2 treatments, 3 weeks apart
allergic reaction to Taxotere (extreme face rash)
2 treatments of Adriamicin & Cytoxin, 3 wks apart
6 treatments of Taxol one week apart + Herceptin, ending 11/17/09 followed by Herceptin 3 weeks apart for the balance of a year
Managing very well after initial reactions to TCH
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Old 04-11-2010, 06:37 PM   #483
PatriceH
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Re: Please post your two cents on Herceptin "side effects" real or perceived!

Interesting...My lower back has been hurting a few weeks...still not sure if my monthly is coming back. that is what it feels like.

I feel tired, but thought it was a remnant of all of what I've been through...Though I must say that I've been weaning off of Cymbalta that I was on for neuropathy and I'm not as tired. Hopefully neuropathy stays minimally at bay without being on it...I thought it was worth a try..

And I suppose kind of a blessing...This is the worst pollen in 12 years where I live and this is the first year it hasn't bothered me! It's funny what you trade off for!
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Old 04-12-2010, 06:38 AM   #484
sandyinde
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Re: Please post your two cents on Herceptin "side effects" real or perceived!

Thanks for your comments Patrice. I'm 69, so I don't have the monthly issue. I forgot to mention in my earlier post that I have had a drippy nose for months and sometimes get a coughing spell that I attribute to post-nasal drip. But it seems just about the same now, in pollen season, as it has been for several months.
Sandy
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Diagnosed 5/14/09; stage 0
Mastectomy 6/4/09
upgraded to Stage 1A, receptors negative; HER2 positive
started chemo 7/21/09 TCH 2 treatments, 3 weeks apart
allergic reaction to Taxotere (extreme face rash)
2 treatments of Adriamicin & Cytoxin, 3 wks apart
6 treatments of Taxol one week apart + Herceptin, ending 11/17/09 followed by Herceptin 3 weeks apart for the balance of a year
Managing very well after initial reactions to TCH
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Old 04-12-2010, 12:04 PM   #485
weety
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Re: Please post your two cents on Herceptin "side effects" real or perceived!

I'm 39 and I feel like I'm 89. I'm stiff and achy all the time and if I even sit in one position for longer than about 10 minutes I get all stiff when trying to get up. I'm not sure if it is the herceptin or the lack of estrogen from the chemo-pause.

I also have the eye problems. I'm not sure if it is dry eye, but I'm going to try some drops and see if that helps.

I'm tired of feeling old and fatigued. I can barely even make myself do a short session on Wii Fit because just thinking about having to lift up my legs for even something as simple as the Step Aerobics makes me tired! I sure hope this gets better as time goes on. . . but I'm scared it might be the lack of estrogen, like I mentioned above, and if so, it will probably be long-term. YUCK.
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Diagnosed 7/09 with 7mm IDC ER weakly +, PR -, Her2+

TCH chemo 8/09-12/09

Ooph/hysterectomy 4/10

Started Femara 6/10

Completed year of herceptin 10/11

Zometa 1/11 (2X/yr for 2yrs)

Hopefully nothing else!!!!
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Old 04-12-2010, 12:17 PM   #486
weety
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Re: Please post your two cents on Herceptin "side effects" real or perceived!

I forgot to add about the low bloodwork. I'm no longer anemic (4 months out) but my WBC's and platelet scores still seem to jump all over the place still. At my last herceptin treatment my WBC's were only 2.4!!! My onc said "Wow, that's like chemo levels!!!" Last week they were back up to 4.1, but that's still pretty low.
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Diagnosed 7/09 with 7mm IDC ER weakly +, PR -, Her2+

TCH chemo 8/09-12/09

Ooph/hysterectomy 4/10

Started Femara 6/10

Completed year of herceptin 10/11

Zometa 1/11 (2X/yr for 2yrs)

Hopefully nothing else!!!!
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Old 05-02-2010, 10:09 PM   #487
pibikay
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Question Re: Please post your two cents on Herceptin "side effects" real or perceived!

I am a care giver and I am just putting down what I have noticed.It is my wife who is undergoing chemo & herceptin.Her cheeks get puffed up and she says she cannot taste somethins.But during the tests after the first herceptin and before the second the RBC WBC count have risen.But the protein has come down as also calcium.After her second chemo last wek with herceptin for the last two days she says that it pains a lot when she walks using the walker.Her musceles nerves and joints ache.But she has got back her appetitie today
PBK
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Old 05-03-2010, 02:16 PM   #488
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Re: Please post your two cents on Herceptin "side effects" real or perceived!

PBk,

Welcome to the board. The redness could be from the steroids. I had pain in my bones also.

Amelia
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Old 05-03-2010, 04:15 PM   #489
Nancy L
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Re: Please post your two cents on Herceptin "side effects" real or perceived!

I have been on Herceptin since Dec 2004 when I was diagnosed Stage IIIC. Tykerb was added in March 2009 when I was diagnosed Stage IV. I receive Herceptin every 3 weeks. Main side effects from Herceptin are runny nose, flaky nails and leg cramps.
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Old 05-03-2010, 05:10 PM   #490
linda b
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Re: Please post your two cents on Herceptin "side effects" real or perceived!

I was on Herceptin from April 2007 to May 2009, every three weeks. Side effects- weight gain, thin nails, hot flashes (menopause?). My blood counts and MUGA were normal throughout the two years
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diagnosed 1/07
bilateral mastectomy 2/07
chemo 4-6/07
started Herceptin 4/07
radiation to lower back 8/07
reconstructive surgery 6/08
off herceptin 5/09
radiation to neck 8/09
hysterectomy 9/09
started Arimidex 10/09
off Arimidex, started Femara 3/10
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Old 05-03-2010, 07:24 PM   #491
Whonoze
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Re: Please post your two cents on Herceptin "side effects" real or perceived!

I have been on since 2/07. Main side effects are runny nose, thin nails, bruise easily and frequest foot cramps.
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Old 05-03-2010, 08:32 PM   #492
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Re: Please post your two cents on Herceptin "side effects" real or perceived!

I was on herceptin with taxol and then herceptin by itself every 3 weeks for a year. My cancer was stage 3c. I felt no side effects from the herceptin by itself. The taxol gave me mild tingling in the fingers.
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Old 05-04-2010, 12:14 PM   #493
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Unhappy Re: Please post your two cents on Herceptin "side effects" real or perceived!

Hi Lani,

first of all, i need to inform you that Iím not English native speaker, hope that you will be able to understand to what i have to say.
My mom is on the 13 cycle of herceptine, her biopsy test is her2 stage 3+ positive of the breast cancer, all the rest was clean (such as bones, lungs liver kidneys etc.), also she is diabetic, during chemo (doxorubicin 6 cycles, docetaxel 4 together with herceptine0. During this period she was fine, she finalized radiation therapy oct 2009 perfectly, after the 12 cycle of herceptine which is taking every three weeks, she got a flu and had problem with lungs, during this period, her oncolog was on holiday, and i had to direct her to another doctor who is just Chest Doctor. He is suspecting on having a spread since her lungs look in very bad condition, (i hope that Iím using the right words, i again apologies).
According to her oncolog, it is impossible to have a spread of the cancer during the cycles, i am wondering is this true or not.

She has 5 more cycles of herceptine to go, but right now, she is being treated from so called lung disease, which made her very weak.

it is worth to mention that, every time she took the herceptine, after 3-4 days she was feeling very bad, and for a week or so, she was recovering. this effects made me think to stop with herceptine, but her oncolog advised not to do so, since according to her it is a perfect medicament.

i hope and appreciate to have an opinion or information on this regard,

Thanks allot, Edi
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Old 05-14-2010, 12:37 AM   #494
pibikay
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Re: Please post your two cents on Herceptin "side effects" real or perceived!

The latest on side effets of my wife.
The wbc has come down to 1400.Haemoglobin little < normal range.Fever occassionly with sweating Pains in the legs. Bloody motion.She is due for her next chemo and herceptin on the 18th.Onc said normal side effects
PBK
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Old 05-14-2010, 12:54 PM   #495
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Re: Please post your two cents on Herceptin "side effects" real or perceived!

I've been on herceptin alone for 6 months.

Current side effects: extreme fatigue, especially the first week after infusion, moderate muscle weakness, moderate muscle and bone pain, occasional headaches, persistent insomnia, occasional nose bleeds, acne/rashes.
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Diagnosed 3/13/2009 from FNA, 39 years old.
4/09 lumpectomy with SNB, did not obtain clear margins.
5/09 - BMX with full axillary dissection on right side.
Final pathology report: 4cm+ high grade DCIS tumor with micro-invasive idc, 2/32 lymph nodes, ER/PR-, Her2+++, Stage IIa

7/09 - started TCH, finished 10/09
11/09 - 9 more months of Herceptin, finished 7/10

Reconstruction scheduled for Jan 2011

Expander placement completed - January 2011
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Old 05-15-2010, 06:28 AM   #496
CampyGrandma
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Re: Please post your two cents on Herceptin "side effects" real or perceived!

Diagnosed in Feb. 2010, Stage 2b, ER/PR neg, Her-2 pos. I am , age 63 and do not have any other health problems. FEC 75 every three weeks (have had 3 and 1 more to go), then will do Taxel once a week for 12 weeks, then lumpectomy, then radiation. Have had 10 doses of herceptin and plans are to continue that for a year. I almost feel bad posting this but I have not had any problems from the herceptin The first infusion only was 90 minutes and I got really chilled but all subsequent (once a week)infusions I don't have any problems. Interesting good side effect is that before being diagnosed my back bothered me often (I have had 3 back surgeries and my spine is fused with a titanium cage) and I haven't had any back pain since all this started! Guess my mind has been focused on other things.
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Old 05-24-2010, 05:14 AM   #497
pibikay
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Re: Please post your two cents on Herceptin "side effects" real or perceived!

After her last Herceptin on the 197h after the first 48Hrs she felt weak and tired and had breatlessness
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Old 05-30-2010, 01:11 PM   #498
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Re: Please post your two cents on Herceptin "side effects" real or perceived!

Just finished my herceptin on 5/26/10. I'm perpetually tired. Fingernails are fragile and have nosebleeds. Other than that, no side effects from the herceptin.

I'm 57 years old, IDC stage 1, grade 3, er-/pr-/her2+++, 1.2 cm tumor, no nodes, lumpectomy, lat flap.
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Old 06-19-2010, 09:56 PM   #499
gonnabstrong
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Re: Please post your two cents on Herceptin "side effects" real or perceived!

I just wanted to warn anyone who has a previous heart condition NEVER to take Herceptin. I had open heart surgery as a child and now due to Herceptin I have congestive heart failure. Cancer ruined my life real good.
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Diag 08/13/09 age 40
IDC Stage I, Grade 2, 1.9 cm Primary tumor
Extensive DCIS, Grade 3
ER/PR+, Her2+++
No Vascular Invasion
sentinel nodes Micro invasion 2/3
full mastectomy left breast
Taxol + Herceptin 12xweekly
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Old 06-20-2010, 12:03 PM   #500
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Re: Please post your two cents on Herceptin "side effects" real or perceived!

I - too - had heart damage from Herceptin, but I wonder now :

Was it the Herceptin or the fact that we used a PASSPORT implant to put Herceptin directly into my heart?

Gonna, Did you have a passport or did they use your veins directly ??

Susanne - I am a member here but forgot to sign in first.
Diagnosed in 2006
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