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Topic: TRIPLE POSITIVE GROUP

Forum: HER2+ (Positive) Breast Cancer —

Testing, treatment, side effects, and more.

Posted on: Jan 31, 2011 07:30AM - edited Dec 10, 2012 08:55AM by TonLee

TonLee wrote:

This is primarily for people who find themselves with THREE +'s by their diagnosis. 

If you are new to breast cancer, please click on the link below and read.  It is "What I Wish I Knew At the Beginning of Treatment."

http://community.breastcancer.org/forum/6/topic/797454



IDC, 2cm, Stage IIIa, Grade 2, 4/4 nodes, ER+/PR+/HER2+, Skin Sparing uni-MX with TE, TCH, Rads Dx 9/14/2010, IDC, 2cm, Stage IIIA, Grade 2, 4/4 nodes, ER+/PR+, HER2+
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Feb 4, 2011 10:25AM kim40 wrote:

I'm just going to go back a bit on the nursing issue.

I too had problems nursing 15 years ago.  My left breast caused me a lot of problems at the time and I develop an infection in that breast, the same breast as my breast cancer.  Fast forward to 8 years, I had a benign lump removed, then fast forward another 5 years - breast cancer.  I wonder too if it was all releasted.  The benign lump that I had removed was not in the same position at all as my cancer.  It was on two different side of my breast.  Mine too was around the 11 o'clock position.  I just wonder now if it has been growing there since my benign lump was removed.  I was 35 at that time and I demanded to be screen then, but my BS told me that it was just somehting that happens, no reason to be alarmed.

I went to seem by family doc one week before my 40th b-day for my yearly rub down, and I asked about getting a mammogram, seeing how I was turning 40 the following week.  She said that she didn't feel anything during the BSE, so I'm ok.  Me, being naive about BC, said ok and went on my jolly way.  1 year later, to the date of my yearly checkup, I was d/xed.  I should have been more adamant on getting screened, something that I will always kick my rear end for.  But at the end of the day, I will always wonder if the infection that I got when I was breast feeding was a start of something later down the road.

Kim "I Run for Life" - Melissa Ethridge Dx 1/6/2009, IDC, 5cm, Stage IIIC, Grade 3, 14/19 nodes, ER+/PR+, HER2+
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Feb 4, 2011 10:28AM lago wrote:

Kriskat your doctor probably wants you to take it easy so you don't get an infection. I had a BMX and never took any pain meds. I do remember my arm hurt when they pulled the drain out from the left. I was OMG what the hell. Wish they warned me that was coming. I though they pulled out something important! Hope those margins come back clear.

I second libraylil Vaseline up the nose to help with the nose bleeds. Works wonders. They start 1 week after infusion. This time I only got 3.

Welcome to all the newbies.

DONE!! goo.gl/IoaN6U • Tattoos 2.7.2012 • Nipples 10.6.2011 • Exchange 6.24.2011 • Chemo 1.18. 2011 • BMX 8.31.2010 Dx 7/13/2010, IDC, 5cm, Stage IIB, Grade 3, 0/14 nodes, ER+/PR+, HER2+
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Feb 4, 2011 11:05AM lago wrote:

hillck I think it can be from both. I'm hoping I get lucky and it's from the taxotere but my onc said herceptin.
DONE!! goo.gl/IoaN6U • Tattoos 2.7.2012 • Nipples 10.6.2011 • Exchange 6.24.2011 • Chemo 1.18. 2011 • BMX 8.31.2010 Dx 7/13/2010, IDC, 5cm, Stage IIB, Grade 3, 0/14 nodes, ER+/PR+, HER2+
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Feb 4, 2011 12:40PM saralmom wrote:

hillck and lago - I definitely had a drippy and sometimes bloody nose during the TH.  And since Herceptin alone I don't see the blood anymore.  Just really drippy and gross.  I think the Taxol does the boody part - because **TMI ALERT** I had alot of issues with my hemorroids bleeding on Taxol and that went away when I was done too.  Maybe it has a blood effect?
Dx 2/3/2010, IDC, <1cm, Stage IIA, Grade 3, 2/16 nodes, ER+/PR+, HER2+
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Feb 4, 2011 01:10PM Omaz wrote:

saralmom - LOL  **TMI ALERT** - very funny!
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Feb 4, 2011 01:15PM libraylil wrote:

kim40  I too would have been glad to hear "nothing was wrong".  Since I have been on these boards I will never feel that way again. 

Although I did not breast feed my areas of unpleasantness were at 2:30 and 12:00 approx.  Both on the armpit side.

 Heck we could start our own clinical study.   

libray lil

Dx 7/15/2010, ILC, 3cm, Stage IIB, Grade 3, 3/14 nodes, ER+/PR+, HER2+ Chemotherapy 8/4/2010 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 8/7/2010 Herceptin (trastuzumab) Surgery 1/4/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel, Underarm/Axillary Radiation Therapy 4/6/2011 Breast, Lymph nodes Hormonal Therapy 7/5/2011 Arimidex (anastrozole)
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Feb 4, 2011 01:48PM negirly wrote:

I agree with the noses... Bloody with taxol and drippy with herceptin. My nurse recd Vaseline while on taxol and it helped.

Karyn

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Feb 4, 2011 05:10PM webu wrote:

Speaking of unpleasant SEs, has anyone else found themselves passing really potent gas after chemo? I've never driven the dog out of the room beforeEmbarassed.
Lumpectomy 12/6/11; TCH x 6, weekly Herceptin during chemo and then every three weeks for a total of twelve months - start date 1/14/11 - chemo will be followed by rads Dx 11/12/2010, IDC, 2cm, Stage II, Grade 3, 0/5 nodes, ER+/PR+, HER2+
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Feb 4, 2011 05:35PM lago wrote:

Webu there is an entire thread on the stage IV forum about passing gas. Yup, you better get used to it. Chemo does a job on our entire digestive track.
DONE!! goo.gl/IoaN6U • Tattoos 2.7.2012 • Nipples 10.6.2011 • Exchange 6.24.2011 • Chemo 1.18. 2011 • BMX 8.31.2010 Dx 7/13/2010, IDC, 5cm, Stage IIB, Grade 3, 0/14 nodes, ER+/PR+, HER2+
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Feb 4, 2011 06:46PM TonLee wrote:

Omaz you found your lump watching tv?  The mental picture is cracking me up.  Like, ho hum, I was watching Survivor and doing a breast exam at the same time...lol. 

Webu hope things went well today!  As far as the gas goes...Herceptin stinks.  I mean it is really awful when it comes out, be it air, water, or more solid matter (ugh).  I wonder if I smell like it when I sweat.  I will only peck my husband's cheek or lips because I don't want him to taste it.

Kriskat I had my drain in for 2 weeks, and my PS said, "This won't hurt."  Then he ripped it out.  I almost jumped off the table...and I bled a lot when he yanked that sucker out.  Here's to clean margins!

Kward, welcome!  I'm surprised to read about Boniva.  They prescribe it at my facility to women with bone mets as pretty much standard care.  I also didn't realize Zofran causes headaches!  I had one for two weeks and the Onc said it was probably just the chemo.  I take Zofran/Compazine.  But I don't usually need the Compazine.

Libra I'm doing the Vaseline, but it seems like it greases the way for the snot/blood to come out faster and I don't even feel it! Lol.  There's just no getting around how gross it is.  I feel like my grandma walking around with tissues under my sleeve!

Kim, about the breast feeding thing...it does make me wonder.  Probably not a whole lot of research $$ on answering that question.  But if there was some sort of established connection between BC and nursing problems (ie smaller breast, not as much milk production, baby not liking it, etc...) women could start being checked earlier...though I think MRIs are better than the mammo machine for women with dense breast tissue.

IDC, 2cm, Stage IIIa, Grade 2, 4/4 nodes, ER+/PR+/HER2+, Skin Sparing uni-MX with TE, TCH, Rads Dx 9/14/2010, IDC, 2cm, Stage IIIA, Grade 2, 4/4 nodes, ER+/PR+, HER2+
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Feb 4, 2011 06:52PM Omaz wrote:

TonLee - LOL!  Actually it was reruns of Magnum PI. 
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Feb 4, 2011 06:58PM - edited Feb 4, 2011 07:03PM by suzieq60

Omaz - I've been watching reruns of Magnum over here in Oz - it's on EVERY day at 2pm - I just love it.

Sue

2nd diagnosis October 2010 - IDC 5.8mm node negative - missed on mammogram in October 2009 Dx 10/13/2009, ILC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+
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Feb 4, 2011 07:01PM - edited Feb 4, 2011 07:02PM by carberry

This Post was deleted by carberry.
Carrie Dx 10/25/2010, IDC, 2cm, Stage IIIA, 1/25 nodes, ER+/PR-, HER2+
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Feb 4, 2011 07:03PM - edited Feb 4, 2011 07:08PM by TonLee

Welcome Carberry!

Congrats on almost being done with chemo!  That's fantastic. 

Long road ahead, hope you'll allow us to share the journey.

IDC, 2cm, Stage IIIa, Grade 2, 4/4 nodes, ER+/PR+/HER2+, Skin Sparing uni-MX with TE, TCH, Rads Dx 9/14/2010, IDC, 2cm, Stage IIIA, Grade 2, 4/4 nodes, ER+/PR+, HER2+
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Feb 4, 2011 07:07PM carberry wrote:

HEY EVERYONE, I too am triple positive  Will receive my last chemo next week.  Cant wait as I am getting sicker with each treatment.  Then on to surgery, MX with recon  possible DEIP then rad and tamox.  this is such a long journey..... want o be able to actually say  YES I FEEL GOOD TODAY.

Carrie Dx 10/25/2010, IDC, 2cm, Stage IIIA, 1/25 nodes, ER+/PR-, HER2+
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Feb 4, 2011 07:16PM carberry wrote:

Hi TonLee i noticed your from Ohio, my son goes to univ of Akron, have spent alot of time visiting ther and I'm liking OH  and by the way I also have STINKY stuff coming out of every pore of my body!!!

Carrie Dx 10/25/2010, IDC, 2cm, Stage IIIA, 1/25 nodes, ER+/PR-, HER2+
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Feb 4, 2011 07:16PM lago wrote:

HI carberry. welcome to triple +

Omaz you said you were giving yourself a breast exam while watching Tom Sellick. OK, um right, I'm not buying that one. 

DONE!! goo.gl/IoaN6U • Tattoos 2.7.2012 • Nipples 10.6.2011 • Exchange 6.24.2011 • Chemo 1.18. 2011 • BMX 8.31.2010 Dx 7/13/2010, IDC, 5cm, Stage IIB, Grade 3, 0/14 nodes, ER+/PR+, HER2+
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Feb 4, 2011 07:31PM TonLee wrote:

Lol Lago.

Carberry...yes, I am in a suburb of Dayton Ohio. 

IDC, 2cm, Stage IIIa, Grade 2, 4/4 nodes, ER+/PR+/HER2+, Skin Sparing uni-MX with TE, TCH, Rads Dx 9/14/2010, IDC, 2cm, Stage IIIA, Grade 2, 4/4 nodes, ER+/PR+, HER2+
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Feb 4, 2011 07:36PM kim40 wrote:

Omaz!  LOL!!

When I was going through treatment, I had nose bleeds also.  My onc said it wasn't anything, but it only started when I started Taxotere and it ended right after.  Hmmmm.....

As for Herceptin - it stinks! In any which way it comes out, it hums.  I know my dog left the room a few times too!  

Kim "I Run for Life" - Melissa Ethridge Dx 1/6/2009, IDC, 5cm, Stage IIIC, Grade 3, 14/19 nodes, ER+/PR+, HER2+
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Feb 4, 2011 07:52PM carberry wrote:

Ha Ha I "blame " the dog for the smell in the room!

Carrie Dx 10/25/2010, IDC, 2cm, Stage IIIA, 1/25 nodes, ER+/PR-, HER2+
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Feb 4, 2011 08:32PM libraylil wrote:

Carberry   I actually had chemo before surgery also.  While my tumor did not completely dissolve I had a good response.  libray lil
Dx 7/15/2010, ILC, 3cm, Stage IIB, Grade 3, 3/14 nodes, ER+/PR+, HER2+ Chemotherapy 8/4/2010 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 8/7/2010 Herceptin (trastuzumab) Surgery 1/4/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel, Underarm/Axillary Radiation Therapy 4/6/2011 Breast, Lymph nodes Hormonal Therapy 7/5/2011 Arimidex (anastrozole)
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Feb 4, 2011 09:08PM negirly wrote:

TonLee - Boniva may be used differently when there are mets already but at one time they thought that it reduced mets but larger studies didn't show a big benefit (In SanAntonio) - but I also think it depends on menosausal status etc... Also many thanks for starting this thread

Karyn

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Feb 4, 2011 09:51PM Teal3Pink1 wrote:

O-kay....... I'll be having my first dose of herceptin on 2/17 and have been reading the literature on side effects, etc. This is the first I've seen about the stink and gas. Great to have a heads up in advance! Any tips? Do I need to start packing febreeze to go in my bag? Along with vaseline, too? What are your recommendations for a herceptin survival kit?

Hugz, Annie (Lump/SNB Jan 2011, Herceptin x1 yr, 16 WBR(prone)+5 boosts, Femara x5 yrs) Dx 12/1/2010, IDC, <1cm, Stage I, Grade 2, 0/4 nodes, ER+/PR+, HER2+
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Feb 4, 2011 09:52PM Smile_On wrote:

Don't know if this is the right place to bring this up, but I feel very comfortable with this thread's group of ladies and am too exhausted to look somewhere else for a place that is more appropriate.  I just got back from my first memorial service since my diagnosis.  I never met this person (a relative of my fiance that does not come to holiday events), but nevertheless her young death and service hit me hard.  I had to mentally check out several times during the service and count screws, tiles, slats in the water fountain or whatever I could to keep myself from crying.  Really brought up some things that I didn't even know I was fearing.  Especially hearing the pain of her husband.

Dx 5/21/2010, IDC, 2cm, Stage IIB, Grade 3, 1/18 nodes, ER+/PR+, HER2+
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Feb 4, 2011 10:07PM lago wrote:

Smile_On I totally understand. I've been going through the same thing. Just posted this this morning on another thread here.

Last Friday I found out that one of the gals from this site (Carolyn) and my state was told that treatment stopped working. She was given 6 months to live.

The following day I went to my friends little sister's funeral. She was 46. Lost her 2 year battle with Hodgkin's lymphoma.

I had just met Caroline in December. She was being treated at the same place as me. She was at the hospital when I had my 4th chemo so I went and visited her right after. I spoke with her on the phone last Saturday. She passed away yesterday morning. Carolyn was 46.She is posted on the wall of Angels at the bottom of the page: http://community.breastcancer.org/forum/56/topic/702430?page=2

I know people pass all the time. It hits a little harder when you actually know these people and they are younger than you even if only by a few years.

----------------------------------------

It's OK to cry. You are supposed to feel. I would worry if you stopped feeling. Hang in there. Remember that death is part of life. Funerals are certainly not as fun as weddings, baby showers or proms but still part of life.  They all bring us together.

DONE!! goo.gl/IoaN6U • Tattoos 2.7.2012 • Nipples 10.6.2011 • Exchange 6.24.2011 • Chemo 1.18. 2011 • BMX 8.31.2010 Dx 7/13/2010, IDC, 5cm, Stage IIB, Grade 3, 0/14 nodes, ER+/PR+, HER2+
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Feb 4, 2011 10:12PM Teal3Pink1 wrote:

Dear Smile On:  Wish I could give you a great big hug right now. Of course this hit you hard. It's always the elephant in the room and going to a memorial service is like getting slapped in the face with a big hunk of fear b/c we all think: this could be me. It is so unfair that you have to have these kinds of thoughts at your age and I am so sorry that you had to go through this. 

Hugz, Annie (Lump/SNB Jan 2011, Herceptin x1 yr, 16 WBR(prone)+5 boosts, Femara x5 yrs) Dx 12/1/2010, IDC, <1cm, Stage I, Grade 2, 0/4 nodes, ER+/PR+, HER2+
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Feb 4, 2011 11:37PM pejkug3 wrote:

It's odd.  I was talking to my grandma a young (almost!) 73.  Longevity isn't strong in her family - her mother dies of ovarian cancer at age 48.

I'm the oldest grandchild, just diagnosed with BC.  I've always been close to her though my rocky childhood with teenaged parents.  It felt odd, yet comforting, to be discussing our own mortalities tonight.

She's pretty spry, I'm early stage with a hopeful prognosis - but there is always the "what if", you know?

Hardest thing I have ever done in my life is bury my daughter after a drowning accident.  When I start to fear BC, I remember my DD and the years of hell after her death in 2003.  And then I feel like a Warrior again.  :)

TEAL - you're already starting chemo?  Hmm...I though we were on a similar timeline.  You must be a bit a head of me.  I haven't even seen oncology yet.

Dx 1/13/2011, IDC, <1cm, Stage IIA, Grade 3, 1/8 nodes, ER+/PR+, HER2+ Surgery 1/27/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel, Underarm/Axillary Targeted Therapy 2/24/2011 Herceptin (trastuzumab) Chemotherapy 2/24/2011 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 6/28/2011 Hormonal Therapy 9/1/2011
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Feb 5, 2011 01:16AM farmfresh wrote:

I have been cancer free for 6 years. Was one of the first to be on Herceptin w/chemo. Dx'd w/a very agressive, fast growing cancer.

If it wasn't for Herceptin (and probably Tamoxifen, too), I would either not be alive today, or I would have had mets elsewhere, resistant to treatment.

The day after I began my treatment, Herceptin was on World News Tonight - and Brian Williams called it the biggest breakthrough for bc in 30 years. A doctor interviewed said "It is significant because these are the women who died. Now there is hope".

We are among the first for targeted therapies that work. We are miracles!

Dx 3/2005, IDC, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR+, HER2+
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Feb 5, 2011 02:54AM Trisha-Anne wrote:

I'll sign into this group too!  It's nice to meet you all - although there are a few here that I recognise - hello Sue!

Had a left mx in October, after finding my lump under the shower and started chemo in November.  Have done 3xFEC and had tx 1 of 3xTaxotere.  FEC wasn't much fun but doable - but Taxotere is a nightmare.  Also had my first herceptin with the first Taxotere.  I'll be going onto Arimadex when chemo is finished.

We are a small group of women, we triple postives, but at least we have some good drugs to fight with. 

Trish

I have made a long journey and been to a strange land and I've seen the dark man very close ... Thomas Wolfe Dx 9/17/2010, ILC, <1cm, Grade 1, ER+/PR+, HER2- Dx 9/17/2010, IDC, 2cm, Stage IIA, Grade 3, 1/6 nodes, ER+/PR+, HER2+ Dx 11/4/2015, IDC, Right, 2cm, Grade 3, 0/5 nodes, ER-/PR-, HER2-
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Feb 5, 2011 02:59AM suzieq60 wrote:

Hello Trish :)

2nd diagnosis October 2010 - IDC 5.8mm node negative - missed on mammogram in October 2009 Dx 10/13/2009, ILC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+

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