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Old 08-28-2011, 09:48 PM   #1
laurab
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Herceptin only

I would like to hear from those who have had HERCEPTIN only with no chemo of any kind before or during treatment. I am a little more than 1/2 way through and have had very few side effects. These are some I've noticed:
. fingernails peel, crack , and split
. drippy nose - occasional , not related to any allergies or cold
. possible connection to bladder infections

I've had no fatigue
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Old 08-29-2011, 12:30 AM   #2
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Re: Herceptin only

Mom had the herceptin nose and bladder urgency.
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Old 08-29-2011, 03:56 AM   #3
kykeon22
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Re: Herceptin only

My mom had been on herceptin for 2 1/2 year, she had no side effects at all except a litthe coughing.
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She has been dignosed in February 2008 BC state IV, left breast multiple nodes size 5 cm, mets lungs and liver. Er+ Pr+ Her neu +++.
3/2008 - 10/2010 Herceptin + Aramidex NED
10/2010 recurrence lung met, pleural effusion, toracentesis
11/2010- Tyverb + Navalbine NED
08/2011 CA-15-3 = 90 scan
08/2011 Scan revealed reccurrence lung met, tiny metastasis on the pleura and pleural effusion.
4 pills tyverb, mytoxantrone once ever three weeks, and Aromasin.
Tykerb and taxol, sever allergic reaction
Tykerb taxotere
Herceptin, perjeta, gemcitabina
C- diff, bad diarrea
Halevan and tamoxifen, tm down from 1200 to 130

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Old 08-29-2011, 10:45 AM   #4
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Re: Herceptin only

I have been on Herceptin only for a little over a year.Very little side effects,but I definitely have the finger nail issues.
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Er-/pr+ her2+++ grade 3 tumor 2.1cm 4 AC/4Taxol.No Herceptin .
2010 age 41 stage IV lung mets er+/pr+ her2+++ grade 3.On Herceptin only.
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Old 08-31-2011, 11:32 AM   #5
Lani
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Re: Herceptin only

Please add this to the regarding side effects of herceptin real or imagined as
your experience is very important to share as those who have had herceptin with/after chemo or antihormonal therapies are unable to be sure which side
effects came from which drugs/their effects.

Drug companies are supposed to do post-marketing research to determine the side effects of drugs once a much larger population starts to take them (clinical trials involves a few thousands only usually) They don't seem to be stepping up to the bat, so what you fine ladies list here could be used to supplement what they do not seem to be doing with any gusto.

Thanks!
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Old 11-29-2011, 05:45 PM   #6
tenngal
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Re: Herceptin only

Hi, I am so glad I found this thread. I have a few questions for some of you. I was diagnosed October of 2010. My tumor was .8 cm so I opted for Lumpectomy. Er+ and HER2. My Surgeon and several oncologist wanted me to do chemo with herceptin. I had 5 opinions and finally found an onc that was willing to do Herceptin only. I did not feel I needed Chemo. the only reason they wanted me to have it was that they had never given it without Chemo. I had no lymph invasion. Underwent 7 weeks of radiation. Started Arimidex and Herceptin the same time as radiation. December 13 will be my last Herceptin treatment. My question is about the Herceptin side effects. I was perimenapausal at diagnosis. Haven't had a period since summer of 2010. My estrogen levels indicate I am definitely menapausal now. Arimidex gave me such bad joint pain I was switched to Aromasin. Peeling nails, hair thinning like crazy, drippy nose, sensitive skin, joint and muscle pain are the side effects I am feeling. Is this the Herceptin or the Aromasin? I am 5'4" and was 115 pounds at diagnosis. I have gained 25 pounds in the last six months. I am a vegetarian and strictly organic. I have never had a weight problem. I am the single mom of an 11 year old boy and have the energy of a 90 year old. It is so depressing not just for me but for my son. I am not the same mother. I have recently developed a problem with the tendons in my thumb. It is so frustrating. I have actually thought about getting off of the AI and going with a more homeopathic treatment of Brevail. Has anyone used this? All I know is that I can't live like this for the next 4 years. I feel guilty complaining. There are so many of you that are experiencing worse symptoms and going through harder treatments. But if you have any advice please tell me. I supplement with D3, Biotin, Selenium, Calcium and multi vitamin. I am really big on coconut oil for everything. All organic for skin and hair. I just can't settle for this to be my new "normal." Will some of these symptoms subside after the Herceptin is over? Is the AI or a combination of both.

Many blessings to you all......
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Old 11-29-2011, 08:09 PM   #7
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Wink Re: Herceptin only

Seattle sounds great to me. I think it would be a good opportunity if you can arrange it, so you are not away from home too much. It would be nice if you can have your appointments on the same days the other ladies on our site have their appointments. I have always had respect for the work the University of Washington Tumor group does.
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Old 12-04-2011, 10:16 PM   #8
laurab
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Re: Herceptin only

My oncologist told me that , in my case, having chemo. with the Herceptin would increase my chance of cure by 1%. Yep - just 1%.
I figured that 1% was not worth the harm that chemo would do to the rest of my body. As to side effects , I do think most of my problems are due to the Arimidex , not the Herceptin. Since I also have arthritis it is often difficult to tell what is causing the joint pain.
I have been trying to lose weight and actually lost 12 pounds since going on Arimidex and Herceptin. I have had terrible hot flashes but find that acupuncture helps quite a bit. I am also taking Vit.D and fish oil. My lab tests did show that my Vit. D level was quite low.
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Old 12-07-2011, 08:57 AM   #9
Hopeful
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Re: Herceptin only

I am sorry I did not see this thread when it was first posted; I was consumed with running a conference at the time.

I was dx at age 52, postmeno, 1.3 cm, node negative, ER+ 80%, Pr+ 50%, Her2 +++ by IHC in June of 2006. My path report gave my Ki-67 as "11% (borderline)". As this is an indication of the rate of proliferation, which was low, and being post meno and highly hormonally positive, my research indicated that I would receive a very minimal benefit from chemotherapy. My oncologist offered me a year of Herceptin w/o chemo, which I did. I had radiation to the affected breast that started around the time the Herceptin tx did, and went on AI's after rads were completed.

The SE's I noticed from Herceptin were the thinning and splitting fingernails and the drippy nose. While my fingernails returned to normal after my tx was completed, I am sorry to say the drippy nose has not. I never had nausea, diarrhea or any gastro symptoms from the Herceptin; I would notice a weird taste in my mouth during and immediately post infusion that was like the glue you lick on the back of an envelope, but that passed.

The SE's from the AI's, on the otherhand were worse, LOTs of joint pain, wrist pain, terrible vaginal atrophy, and tinnitus. The stiffness and paid would improve for a short time when I switched AI's from Femara to Arimidex, but then return. I switched between the two at least 4 times, and determined, also based on my research, that being Her2+, I would derive less benefit from hormone therapy than those who were Her2-. I stopped AI treatment after exactly 3 years. All of the stiffness symptoms cleared up when I stopped the AI, and have not returned. The vaginal atrophy continues to be a problem, and the tinnitus never resolved.

I hope this is helpful.

Hopeful
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Old 12-07-2011, 07:38 PM   #10
tenngal
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Re: Herceptin only

Thanks for your reply.I seriously am considering getting off of the AIs......Have you ever heard of Brevail? You can google and read. it is a High Lignan product put out by Barlean's. It's very interesting. O am going to speak with my onc this Friday. I just can't handle all this joint pain. My quality of life is horrible. I have tried Arimidex and now on Aromasin. I don't feel like switching anymore. They all have side effects. My wrist is also in a aupport sling right now. I feel like it could be trigger thumb or something similar. My muscles all feel like I have run a marathon and I can't get out of bed in the morning. I went from being this vibrant fit person to feeling like I was 99! My 11 year old son is really feeling the brunt of it. I also have tinnitus but that was present before now just getting worse and constant. I have only been on it for a year. I did radiation.....the year long Herceptin and a year of AI. I am just really depressed and want at least half my life back. Read about the Brevail.......I need another opinion coming from someone in the "same boat." thanks!
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Old 12-08-2011, 09:30 AM   #11
Hopeful
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Re: Herceptin only

Tenngal,

I had never heard of Brevail. The information on their web page is interesting, but I am inherently suspect of the business aspect of marketing health products to people. (Doesn't mean that this is not a good product, it is just my personal bias - I feel the same way about Rx drugs marketed to the general public). I would be most interested to hear what your oncologist has to say about it.

Best of luck to you,

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Old 12-09-2011, 10:53 PM   #12
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Re: Herceptin only

Some alternative/complementary cancer therapies have been tested in clinical trials. Most have not. Homeopathic remedies are inherently irrational. Why would something work better the less of it you use?
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4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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Old 12-12-2011, 06:00 PM   #13
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Re: Herceptin only

Couldn't find any non-commercial website for Brevail - except one clinical trial that began half year ago. Turned out it is just another name of the lignan of flaxseed. Should be cheaper just use/eat flaxseed:

http://clinicaltrials.gov/ct2/show/NCT01396369
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7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"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." Irene from Tampa

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Old 12-13-2011, 11:56 AM   #14
mabrooks
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Re: Herceptin only

I had Herceptin only in 2007 for a year - I had a small tumor - no chemo - same issues - runny nose - nails were a mess and my hair was just different, didn't lose it it just changed - but cancer free!!!
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3/16/07 dx DCIS - microinvasion - grade 1
lumpectomy - mammosite radiation treatment 4/07
Estrogen+ and Progestrone+ and HER2neu 3+
Started Herceptin 5/07 once every three weeks
Was On Arimidex -switched to Femara
Oncotype 23
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Old 12-15-2011, 09:08 AM   #15
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Re: Herceptin only

Hi, estoy desesperado buscando donde puedo conseguir a precio economico la vacuna de herceptin para mi madre!! si alguien conoce un dato me avisa por favor!!
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Old 12-16-2011, 02:45 PM   #16
Jackie07
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Re: Herceptin only

Translation:

Hi, I'm looking desperately for places where I can get cheap Herceptin treatment for my Mother!! If anyone knows please give me advice.

"Hi, estoy desesperado buscando donde puedo conseguir a precio economico la vacuna de herceptin para mi madre!! si alguien conoce un dato me avisa por favor!!"
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http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"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." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe
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Old 12-16-2011, 03:23 PM   #17
Mtngrl
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Re: Herceptin only

Thanks, Jackie. That's about what I thought it said. Since the person didn't register, we don't know where the mother is, or anything else, unfortunately.
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Amy
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4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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Old 12-29-2011, 11:10 PM   #18
Paty
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Re: Herceptin only

PodrÃ*a por favor indicarme en que paÃ*s vive y en que institución están tratando a su Sra. madre? Tal vez podrÃ*amos orientarle con alguna información. Gracias.
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Dx. June 30th, 2006 at age 43
Lumpectomy rt breast
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Old 09-10-2012, 04:54 PM   #19
Mamaju
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Unhappy Re: Herceptin only

When is my hair going to grow back? I have peach fuzz and it just doesn't seem to be growing at all. Also, I've lost most of my fingernails. When do they grow back? I won't be done with Herceptin until May, 2013. Im done with chemo.
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Old 09-10-2012, 07:50 PM   #20
Becky
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Re: Herceptin only

When was the last chemo? When I did have chemo, my last one was Jan 31 and by May 31 I had an ultra short pixie (and I mean ultra short).
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Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
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