HER2/Neu Roll Call

Human Epidermal Growth Factor Receptor 2
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Emerald
Site Admin
Posts: 711
Joined: 03pm31America/New_York()
Diagnosed on: 02/01/2008
Diagnosed With: IDC
Secondary Diagnosis: DCIS
Mets: None
Cancer Stage: Stage I
Node Status: 0/3
Tumor Size: 1.3cm
Tumor Grade: Grade 2
Receptor Status: ER+/PR+/HER2/Neu++
Location: Flowery Branch, GA
Contact:

HER2/Neu Roll Call

Postby Emerald » 02am31America/New_York()

Because I just love doing roll calls, only fitting I start one of these also! :lol:

I was dx'd with IDC w/DCIS 2/1/08- 1.3cm/5.0cm- Grade 2- ER/PR/HER2/Neu ++/+++. They did 2 tests on mine because the first one said I was 2++. The second test said I was 3+.

So........Here is the start of the roll call:

Emerald == HER2/Neu 2++/+++ & Herceptin x 18
debralynb == HER2/Neu 2+++ & Herceptin x 52
Estepp == HER2/Neu 2+++ & Herceptin x 31
Daisy == HER2/Neu 2+++ & No Further Tx
lexi == HER2/Neu 2+++ & Herceptin x 18
GingerSnap == HER2/Neu 2+++ & Herceptin x 52
lexislove == HER2/Neu 2+ & Herceptin x 18
chemosabi == HER2/Neu 2+ & Herceptin x 12
"I don't care if my glass is half full or half empty, I am just thankful to have a glass!"
debralynb
Posts: 25
Joined: 27pm28America/New_York()
Diagnosed on: 1-18-2008
Diagnosed With: IBC
Mets: None
Cancer Stage: 3b
Node Status: 2/14
Tumor Grade: Unknown
Receptor Status: Her2/Neu +
Location: Knoxville, TN

Re: HER2/Neu Roll Call

Postby debralynb » 02pm31America/New_York()

I'm here too - I was diagnosed with IBC and tested positive for HER2/Neu on January 18, 2008. Had weekly Herceptin treatments for a year. Just finished January 21, 2009.

Debra
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Emerald
Site Admin
Posts: 711
Joined: 03pm31America/New_York()
Diagnosed on: 02/01/2008
Diagnosed With: IDC
Secondary Diagnosis: DCIS
Mets: None
Cancer Stage: Stage I
Node Status: 0/3
Tumor Size: 1.3cm
Tumor Grade: Grade 2
Receptor Status: ER+/PR+/HER2/Neu++
Location: Flowery Branch, GA
Contact:

Re: HER2/Neu Roll Call

Postby Emerald » 02pm31America/New_York()

Hey debralynb, did I get it right? I guessed at 52 tx's? Thanks for joining the roll call!

I have 7 more to go ... :x
"I don't care if my glass is half full or half empty, I am just thankful to have a glass!"
Estepp
Posts: 9
Joined: 23pm31America/New_York()

Re: HER2/Neu Roll Call

Postby Estepp » 02pm31America/New_York()

Me...
Her2+++.. have had 16 Herceptin so far.. and will continue until Sept. I think I will have 15 left... I do them weekly during rads.. did them weekly with Taxol.. and then will do them every three weeks come April.....ain't it fun ladies!
VoiceOfReason
Posts: 2243
Joined: 18pm28America/New_York()
Diagnosed With: DCIS
Mets: None
Cancer Stage: 1
Node Status: 0/3
Tumor Grade: 3
Receptor Status: ER-, PR-. HER +++

Re: HER2/Neu Roll Call

Postby VoiceOfReason » 02pm31America/New_York()

DCIS grade 3, no nodes involved, double mast. I was a HER +++
I have had 3 "second opinions" and no further treatment was recommended.
Make America [color=#0040FF]GREAT AGAIN !!![/color]
debralynb
Posts: 25
Joined: 27pm28America/New_York()
Diagnosed on: 1-18-2008
Diagnosed With: IBC
Mets: None
Cancer Stage: 3b
Node Status: 2/14
Tumor Grade: Unknown
Receptor Status: Her2/Neu +
Location: Knoxville, TN

Re: HER2/Neu Roll Call

Postby debralynb » 03pm31America/New_York()

Hi Ladies - it's nice to be in a group with you all. Herceptin treatments were actually fun for me. I had my treatments at the breast center so all ladies there were diagnosed with breast cancer. It was like a support group of sorts and I can't say enough about the nurses there. Absolute angels. It was surreal when my treatments were done.

I know the meds stay in your system for a few weeks after your last treatment but does anyone have any idea with SE subside. I really haven't had that many but the most annoying is the drippy nose.

Thanks,
Debra
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Emerald
Site Admin
Posts: 711
Joined: 03pm31America/New_York()
Diagnosed on: 02/01/2008
Diagnosed With: IDC
Secondary Diagnosis: DCIS
Mets: None
Cancer Stage: Stage I
Node Status: 0/3
Tumor Size: 1.3cm
Tumor Grade: Grade 2
Receptor Status: ER+/PR+/HER2/Neu++
Location: Flowery Branch, GA
Contact:

Re: HER2/Neu Roll Call

Postby Emerald » 04pm31America/New_York()

As usual, I didn't notice you guys had posted to be added. :?

BUT, I got you added now. Thanks for joining in!!!
"I don't care if my glass is half full or half empty, I am just thankful to have a glass!"
lexi
Posts: 17
Joined: 27am28America/New_York()

Re: HER2/Neu Roll Call

Postby lexi » 04pm31America/New_York()

Oooo, me me! I was diagnosed stage IIIb in 2005. pos lymph nodes. I had 4 A/C, 4 Taxol and a years worth of herceptin. I did have to stop the herceptin for several weeks do to some heart issues. My heart restored itself and I was able to continue and finish my herceptin txs. I finished the herceptin txs in Nov. 06. :D
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Emerald
Site Admin
Posts: 711
Joined: 03pm31America/New_York()
Diagnosed on: 02/01/2008
Diagnosed With: IDC
Secondary Diagnosis: DCIS
Mets: None
Cancer Stage: Stage I
Node Status: 0/3
Tumor Size: 1.3cm
Tumor Grade: Grade 2
Receptor Status: ER+/PR+/HER2/Neu++
Location: Flowery Branch, GA
Contact:

Re: HER2/Neu Roll Call

Postby Emerald » 05pm31America/New_York()

I got you lex :D I assumed you had 18 tx's so if that is incorrect, please let me know.

Thanks for joining in!
"I don't care if my glass is half full or half empty, I am just thankful to have a glass!"
lexislove
Posts: 84
Joined: 03pm31America/New_York()
Diagnosed With: IDC
Mets: None
Tumor Grade: 3
Receptor Status: ER+, Her2+

Re: HER2/Neu Roll Call

Postby lexislove » 07am31America/New_York()

Dx Sep 14 2007 IDC 8cm, 0/6 nodes, ER+, Her2+

Finished 1 year Herceptin, Nov 17 2008

Currently on Lupron, Tamoxifen and Zometa
Doing te exchange and reduction / lift Fall 2009

1.5 years NED :D
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GingerSnap
Forum Moderator
Posts: 726
Joined: 06pm31America/New_York()
Diagnosed With: IDC
Cancer Stage: I
Node Status: 0/2
Tumor Size: 1.7
Tumor Grade: 2-3
Receptor Status: er/pr/her2+++

Re: HER2/Neu Roll Call

Postby GingerSnap » 07am31America/New_York()

Me ... too ... Her2+++
4 AC
12 weekly taxol with Herceptin
then finished up the Herceptin for a year every 3 weeks.

It was just way easier to go every three weeks and get the H in triple doses.

My MUGA dropped below 49, so I was on a 3 month break til I got back up to 50, then was tested monthly to make sure it stayed that way. My little heart was a trooper and held at 50, then 52 and finished up I think at 53 or 54.

Altogether, from the start of chemo in Oct 2005, I finally finished my last Herceptin in March 2007. Took a long time, lots of drippy noses. Gross -- bugars, bloody noses. Slow growing hair. Had lost all my hair, even nose hair, eyelashes and eybrows.
PRASS MEDUSA PRASS MEDUSA
lexislove
Posts: 84
Joined: 03pm31America/New_York()
Diagnosed With: IDC
Mets: None
Tumor Grade: 3
Receptor Status: ER+, Her2+

Re: HER2/Neu Roll Call

Postby lexislove » 07pm31America/New_York()

Hmmmm ....

I thought it was just ME with the drippy nose and nose bleeds..lol

Horrid. :oops: I went to the grocery store one day while doing Herceptin was paying for my milk, and the poor cash register's face went red!
I was like whats wrong?
Then she says" ummmm your having a nose bleed."
I was mortified! I've never , ever had a nose bleed in my life! Stupid Herceptin.
It took me months to go back to that grocery store.

And Herceptin slowed my hair growth too. Sine I finished, 4 months ago, now it's starting to pick up...but still not fast enough. :(
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GingerSnap
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Posts: 726
Joined: 06pm31America/New_York()
Diagnosed With: IDC
Cancer Stage: I
Node Status: 0/2
Tumor Size: 1.7
Tumor Grade: 2-3
Receptor Status: er/pr/her2+++

Re: HER2/Neu Roll Call

Postby GingerSnap » 08pm31America/New_York()

Em, I didn't have 18 ..... I had 12 straight weekly .... then 13 more ... I had to have 52 treatments of Herceptin. (13 of them were triple doses) Are you not having that? I was in the trial, the tail end of it before it became protocol.
PRASS MEDUSA PRASS MEDUSA
Chemosabi

Re: HER2/Neu Roll Call

Postby Chemosabi » 09am31America/New_York()

Me too! Diagnosed in 2005 with IDC er/pr negative and HER2+! Only had 12 rounds of Herceptin and had to stop because of heart issues. Funny, I still have a drippy nose.

Chemosabi
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Emerald
Site Admin
Posts: 711
Joined: 03pm31America/New_York()
Diagnosed on: 02/01/2008
Diagnosed With: IDC
Secondary Diagnosis: DCIS
Mets: None
Cancer Stage: Stage I
Node Status: 0/3
Tumor Size: 1.3cm
Tumor Grade: Grade 2
Receptor Status: ER+/PR+/HER2/Neu++
Location: Flowery Branch, GA
Contact:

Re: HER2/Neu Roll Call

Postby Emerald » 09pm31America/New_York()

Gin, I didnt start hercep till after a/c. I get every 3 weeks so will be 18 when I am done. I have heard of others getting same protocol as you too. I fixed your roll call, thanks for correcting me. :D

chemo got u added. thanks for joing in!
"I don't care if my glass is half full or half empty, I am just thankful to have a glass!"
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GingerSnap
Forum Moderator
Posts: 726
Joined: 06pm31America/New_York()
Diagnosed With: IDC
Cancer Stage: I
Node Status: 0/2
Tumor Size: 1.7
Tumor Grade: 2-3
Receptor Status: er/pr/her2+++

Re: HER2/Neu Roll Call

Postby GingerSnap » 10pm31America/New_York()

For me too, it was 4 A/C before starting the Herc/Taxol regimen ... and in between a MUGA ... after 12 treatments with the Herceptin/Taxol, I went from a 66 to 49 ... I don't think they could do the Adriamycin with Herceptin ... your heart would just give out!!!!

From what I have read, the most you can ever have of Adriamycin/Cytoxan is 4 treatments. If we ever got CA again, we can't go on it???
PRASS MEDUSA PRASS MEDUSA
lexislove
Posts: 84
Joined: 03pm31America/New_York()
Diagnosed With: IDC
Mets: None
Tumor Grade: 3
Receptor Status: ER+, Her2+

Re: HER2/Neu Roll Call

Postby lexislove » 10pm31America/New_York()

I've heard the same thing too actually.....

Makes me kinda nervous, especially since AC is suppose to be excellent at fighting Her2 BC. :?
Chemosabi

Re: HER2/Neu Roll Call

Postby Chemosabi » 11am31America/New_York()

I also have 4 rounds of a/c then started my herceptin with the taxotere. I don't think I could go through a/c again. For that matter go through any chemo again. The thought is chilling. I do know there are alot of new chemo's out there for us if we need them.

Chemosabi
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Emerald
Site Admin
Posts: 711
Joined: 03pm31America/New_York()
Diagnosed on: 02/01/2008
Diagnosed With: IDC
Secondary Diagnosis: DCIS
Mets: None
Cancer Stage: Stage I
Node Status: 0/3
Tumor Size: 1.3cm
Tumor Grade: Grade 2
Receptor Status: ER+/PR+/HER2/Neu++
Location: Flowery Branch, GA
Contact:

Re: HER2/Neu Roll Call

Postby Emerald » 11pm31America/New_York()

My onco told me that if mine came back it would be A/C resistant, so I am guessing too that you can only have it once.

But come on ladies, we are not going to have to worry about it, cuz it "aint" coming back.
"I don't care if my glass is half full or half empty, I am just thankful to have a glass!"
User avatar
GingerSnap
Forum Moderator
Posts: 726
Joined: 06pm31America/New_York()
Diagnosed With: IDC
Cancer Stage: I
Node Status: 0/2
Tumor Size: 1.7
Tumor Grade: 2-3
Receptor Status: er/pr/her2+++

Re: HER2/Neu Roll Call

Postby GingerSnap » 11pm31America/New_York()

See, this is why I have not finished my recon work ......... still debating the prophy because there is no way I want to endure another primary.
PRASS MEDUSA PRASS MEDUSA
VoiceOfReason
Posts: 2243
Joined: 18pm28America/New_York()
Diagnosed With: DCIS
Mets: None
Cancer Stage: 1
Node Status: 0/3
Tumor Grade: 3
Receptor Status: ER-, PR-. HER +++

Re: HER2/Neu Roll Call

Postby VoiceOfReason » 18pm31America/New_York()

ANyone else out there a HER +++ and no further treatment was recommended???
Make America [color=#0040FF]GREAT AGAIN !!![/color]
User avatar
Emerald
Site Admin
Posts: 711
Joined: 03pm31America/New_York()
Diagnosed on: 02/01/2008
Diagnosed With: IDC
Secondary Diagnosis: DCIS
Mets: None
Cancer Stage: Stage I
Node Status: 0/3
Tumor Size: 1.3cm
Tumor Grade: Grade 2
Receptor Status: ER+/PR+/HER2/Neu++
Location: Flowery Branch, GA
Contact:

Re: HER2/Neu Roll Call

Postby Emerald » 19pm31America/New_York()

Daisy, I was rather shocked that you are HER2/Neu strongly positive and didnt have Hercerptin. What did your doctor say about Herceptin?
"I don't care if my glass is half full or half empty, I am just thankful to have a glass!"
VoiceOfReason
Posts: 2243
Joined: 18pm28America/New_York()
Diagnosed With: DCIS
Mets: None
Cancer Stage: 1
Node Status: 0/3
Tumor Grade: 3
Receptor Status: ER-, PR-. HER +++

Re: HER2/Neu Roll Call

Postby VoiceOfReason » 20am31America/New_York()

I thought it was because herception was not approved for DCIS and the fact that I was ER/PR negative.
ANyone else ER/PR negative and Her positive, taking Herception.

On my "third opinion" (I did really like this Dr. he is the head of the tumor board here in Milwaukee) he said that DCIS is normally not even tested for Her/Neu 2 because 60% of DCIS tests positive. I noticed on the bio's on bc.org that very few women with DCIS were tested for Her/Neu 2.

Still the whole situation make me nervous.
Make America [color=#0040FF]GREAT AGAIN !!![/color]
User avatar
Emerald
Site Admin
Posts: 711
Joined: 03pm31America/New_York()
Diagnosed on: 02/01/2008
Diagnosed With: IDC
Secondary Diagnosis: DCIS
Mets: None
Cancer Stage: Stage I
Node Status: 0/3
Tumor Size: 1.3cm
Tumor Grade: Grade 2
Receptor Status: ER+/PR+/HER2/Neu++
Location: Flowery Branch, GA
Contact:

Re: HER2/Neu Roll Call

Postby Emerald » 20pm31America/New_York()

Very interesting......Know what else I find interesting? I have met many women who were originally dx'd with DCIS, then mets........

Seems to me that because DCIS is "pre-cancer" or "contained cancer" , it isn't taken as serious as it should be. Perhaps DCIS should be treated more aggressively? Who knows
"I don't care if my glass is half full or half empty, I am just thankful to have a glass!"
VoiceOfReason
Posts: 2243
Joined: 18pm28America/New_York()
Diagnosed With: DCIS
Mets: None
Cancer Stage: 1
Node Status: 0/3
Tumor Grade: 3
Receptor Status: ER-, PR-. HER +++

Re: HER2/Neu Roll Call

Postby VoiceOfReason » 20pm31America/New_York()

do you know if the friends of yours originally DCIS that progressed to mets had mast.?

I was told I could decrease my odds of cancer returning by 30% if I had a double mast. which I did. The DCIS was contained.
Make America [color=#0040FF]GREAT AGAIN !!![/color]

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