Her2 Positive and need info??

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Jean Southward
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Re:Her2 Positive and need info?? - Monday, August 31, 2009 2:42 PM
Thank you for the information and the site HER2+ info.  Now that Chemo is over I find myself digging deeper and wanting more information on what HER2+ means for my future.  I sometimes hear my husband misstating the facts about Herceptin and my being HER2+ and I cringe.  I want to be sure I "get it" before I try to explain it to him so he understands it better.  I think he goes back to hearing a statement made that being HER2+ is a good thing.  He selected that statement to hold on to and I've not corrected it. 
Jean S

Hope is that thing with feathers that perches in the soul and sings the tune without words and never stops...at all.

Emily Dickinson

IDC Stage IIB Grade 3 BC DX on 2-10-09
HER2+++
ER/PR+ 90% 
2 of 6 Node Positive
Double Mastectomy 2-23-09
Completed Chemo TC 7-10
Herceptin until 3-20-10
Arimidex for 5 years Started 8-09 

Tricia Keegan
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Re:Her2 Positive and need info?? - Tuesday, September 01, 2009 3:14 AM
Jean- I believe in some ways your hubby may be right and have a good point and whatever helps us all cope with this can only be a good thing.
A few short years ago this would have been deemed as the direst of all to be, but we now have some solid info on how to treat and actually target these cells along with a couple of new targeted therapies!
While there are no gurantee's of course whatever type of bc we have, it makes sense to be positive, educate yourself and go forward with confidence. There are a few hubbys posting on the her2 site also and I'm sure you'll find all the detailed info you need right there:)
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

PatriciaJH
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Re:Her2 Positive and need info?? - Thursday, September 03, 2009 8:34 AM
Thanks for establishing this forum.  I was diagnosed with breast cancer earlier this month, but told of the HER2/neu issue only yesterday.  Surgery will take place in a week.  I think I am still in shock! It is helpful to hear that there can be positive results.
 
Patricia
 
 

Tricia Keegan
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Re:Her2 Positive and need info?? - Thursday, September 03, 2009 12:15 PM
Hi Patricia,

I'm sorry for your diagnosis but glad you found us here:)

This forum is not very busy but any of us who are her2+ usually post any new info or studies here so it's worth checking in. 
I hope you browse the other forums particularly the recon/surgery where you'll get lots of advice and tips.
We also have an "introductory forum" where you'll find many other newly diagnosed ladies so you need not feel alone.  The sound off is probably the busiest forum and where most people post I think.   Good luck with your upcoming surgery and I hope you have a quick recovery and please keep us posted!
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

Tricia Keegan
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Re:Her2 Positive and need info?? - Thursday, September 03, 2009 12:47 PM
I started a new thread to be sure everyone saw this but will post here also-

Living Proof - the movie on Lifetime Movie Network again

Hi Everyone,

I just saw that the Lifetime Movie Network is airing the movie about the making of Herceptin "Living Proof" with Harry Connick, Jr. again on October 8th at 8p.m. eastern time. If you get this channel, it is a MUST watch. (Be sure and have your kleenix ready.)

http://www.lmn.tv (search for Living Proof)

Tell all of your friends to watch as well, it will help them to understand so much more about our Vitamin H!
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

pilgrim37
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Re:Her2 Positive and need info?? - Wednesday, September 30, 2009 5:22 PM
Hi all-  I am her2+ and just wanted to check in.  I am on preadjunctive chemo -- taxol and herceptin weekly for 12 weeks.  Surgery in December, then 12 weeks A/C, then radiation, then herceptin balance of the year.  Anyone else out there on a similar protocol?
married 19 years to my hubbie
mom to 3 kiddos (5, 7 & 8)
diag. inv. ductal carcinoma, stage IIB/IIIA, her2+
Phase I: 12 wks neoadjuvant herceptin/taxol (DONE!)
Phase II: bilateral mast. on 1/8/2010 (DONE!) Path report:  total tumor evaporation from Phase I!
Phase III: 12 wks a/c chemo starting 1/29/2010 (DONE!)
Phase IV: 5 wks rads (DONE!) 
Phase V: herceptin thru Dec. 2010
Phase VI: arimidex thru July 2015
NED since Jan. 20

Tricia Keegan
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Re:Her2 Positive and need info?? - Thursday, October 01, 2009 7:29 PM
Hi Piligrim,

I had the same treatment but in a different order, as I had surgery first..then a/c followed by 12 weekly taxol/herceptin with the remainder of the herceptin three weekly for a year.
I had rads about a month after chemo finished.
It seems like it'll last forever but does go by quicker than you may think.  If you have any questions I can help with feel free to pm or e mail me and good luck:)
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

PatriciaJH
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Re:Her2 Positive and need info?? - Thursday, October 15, 2009 4:29 PM
Hi
I know so much more than when I first posted here!  (Like how to decipher signatures in the forums.)  I am doing A/C now and will do Taxol/Herceptin after three more cycles, then surgery in Spring, and finish out Herceptin.  I'm in  a clinical trial that is testing Lapinatab, not in that arm, though.  I am seven days out of the first chemo treatment and happy to be writing, eating and smiling.  I am worried about the H1N1 threat, but staying positive.

Pat

Diagnosed-Aug. 7, 2009  Stage 1 ER/PR NEG. HER-2 postive  Grade 2 Comedo Pattern
A/C- 4 treatments every 3 weeks-1st treatment October 8,2009
Taxol + Herceptin weekly for 12 weeks to follow
Surgery in Spring sometime:  decisions to be made
Herceptin- every 3 weeks for 9 months thereafter


Tricia Keegan
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Re:Her2 Positive and need info?? - Friday, October 16, 2009 12:09 PM
Hi Pat,

Glad you're coping okay, you'll get lots of info about the side effects of taxol/herceptin on the chemo forum.
Personally I found it to be a lot more easy to tolerate than a/c!
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

Brenda_
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Re:Her2 Positive and need info?? - Monday, November 23, 2009 9:28 AM
Another Her2 positive survivor here. Now edging up to 3 out, and looking forward to many more years NED.

Tricia Keegan
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Re:Her2 Positive and need info?? - Monday, November 23, 2009 6:50 PM
Well done Brenda and delighted to welcome another her2 sister here:)

If you haven't checked out the her2 site for info be sure to take a look www.her2support.org
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

PatriciaJH
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Re:Her2 Positive and need info?? - Saturday, January 02, 2010 9:12 PM
Great book:  Her-2: The Making of Herceptin, a Revolutionary Treatment for Breast Cancer by Robert Bazell Reads like a novel (maybe because I am HER2 positive :-)   It's a stunning story and one that made me grateful.  The movie "Living Proof" is a shorter version of the story.  I owe my life to Dr. Dennis Slaman and Lilly Tartikoff, it seems!
Pat
Stage 1 DCIS diagnosed August 2009
HER2 Positive, ER/PR Negative
A/C four cycles ended 12/10/09
Taxol/Herceptin weekly started 12/31/09
Found lump by accident, did not show on mammogram
Neoadjuvant therapy with Herceptin
Surgery in Spring 2010 (clinical trial participant)

Kimberly Oliver
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Re:Her2 Positive and need info?? - Thursday, January 07, 2010 5:36 PM
Wow, I should pop into these forums more often!  Just found this thread!  My tumor was also HER2+.  I consider myself cancer free from the date of my last breast surgery on July 23, 2009, as all of my scans came back clear & my oncs are using the terms "full remission & totally cureable" when talking to me. 

I just finished chemo, 6 rounds Taxotere, Carboplatin, Herceptin, on December 10, but will stay on Herceptin for the balance of a year, which will be in late August this year.  Had my 1st Herceptin only infusion on New Year's Eve.  Sooo much nicer to be in & out in about an hour!

Anyway, my MUGA scan reading was 81%, so looks like I'm probably good to go to finish out the year, more than likely.  Just started the radiation yesterday, so I'm sure I'll be posting on that thread soon...as soon as there's something to report! LOL!  Pretty uneventful thus far....

Thanks for these links about HER2+ info. 

=)
<message edited by Kimberly Oliver on Friday, January 08, 2010 9:29 AM>
I'm not saying, I'm just saying...

Dx June 30, 2009
Infiltrating Ductal Carcinoma - left, ER- PR 9%+ HER2+
7/9/09-lumpectomy, 4/15 nodes pos
7/23/09- Reincision for clear margins 
Chemo TCH DONE 12/09  
Rads DONE 2/10
Herceptin DONE 8/10
Start Tamox 9/10
Blog: http://lunatechchick.blogspot.com

Tricia Keegan
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Re:Her2 Positive and need info?? - Friday, January 08, 2010 10:22 AM
Hi Kimberly,

Congrats on finishing your chemo and welcome !

This thread can be a little quiet at times as there really are'nt that many of us here at the moment although I do look in daily.   Your mugga score sounds great and while it may go down a little I really hope it stays high enough to complete your herceptin.
Mine only went as far 52% so managed to get the year done with minimal side effects and no breaks:)

Patricia, I read the book too and it's great and very informative.  Unfortunatly we haven't had the movie show here in Ireland as yet but when we do I'd love to see it.
Thanks for the reminder!
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

Deborah Q
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Re:Her2 Positive and need info?? - Friday, March 05, 2010 11:13 PM
HI. I was diagnosed with HER2+ April 2009, had surgery June 4 2009, had one week of twice a day intenstive radation with a mamosite device embedded into my left breast. Then got very sick and ran fever so could not start chemo until August 2009. Finished chemo last week of October 2009 and now I am doing Herceptin once every three weeks until end of this year 2010. Chemo made me really sick and I ended up in the hospital with neupetic fever (not sure I spelled that right) and then my oncoligist decided that I should stay home in isolation until after all my chemo was done. So I was at home for 4 months and returned to work Dec1. My BC diagnosis was a real surprise for me especially the HER2+ part of it but my doctors have been really wonderful and very inofrmative and straight forward with me. After my inital shock, I think my husband and family were more afarid for me than I was. I also am a diabetic, so treatment has been really rough for me. I am finally getting back to normal somewhat.  This is the first time I have been to this web site and I have read some great information about my treatment that I did not know. I hope to continue to improve. I have had my first follow up mammogram and visit with my surgeon and was told I am doing great and every thing looked clear for now.
 

Deborah

Tricia Keegan
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Re:Her2 Positive and need info?? - Saturday, March 06, 2010 2:54 PM
Hi Deborah and welcome,

I've been offline for a couple of days and just saw your post.
It sounds like things have been rough for you but am so glad you're getting through it all and beginning to recover. 
You can also get some great info on our type of cancer by checking www.her3support.org
Glad you found us and good luck with the herceptin:)
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

R. Lee
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Re:Her2 Positive and need info?? - Wednesday, March 10, 2010 9:01 AM
Hello Ladies.....just checking in......Bec is doing well.  The fatigue from the 16 months of chemo/herceptin is fading fast.  I no longer have to stay home until she's up and going.  Bec is now involved with a group of local women all bc survivors.....interesting to note that this sleepy little deep south community has twice the national average of women diagnosed with breast cancer.  I hope everyone has a good day.  Y'all deserve it!
Hubby to Becky 58
port/pre-op chemo A/C 4X
mast/recon 11/09/07
stage 11A node neg clear margins Herc2 pos
Taxol 5X (neuropathy)
NCS 1/21/08 FOLTX Rx
final Herceptin scheduled 11/21/08
NED HAS ARRIVED!
port removal 12/2/08
abnormal thyroid 11/09
12/28/09 colonoscopy scheduled.....something they found
     in a recent torso MRI...nothing abnormal.

Tricia Keegan
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Re:Her2 Positive and need info?? - Wednesday, March 10, 2010 3:44 PM
Hi ,

So glad to hear Becky is doing better and slowly but surely getting further away from her tx and doing well:)

I'm almost five years out now Ron and doing fine, hope you and Becky gain some confidence from seeing other's survive her2+ cancer so well:)

My best to you both. xx
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

Tricia Keegan
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Re:Her2 Positive and need info?? - Thursday, May 27, 2010 3:15 PM
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

Redwolf8812
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Re:Her2 Positive and need info?? - Thursday, July 22, 2010 9:19 PM
Just diagnosed.  IDC, clinical stage 2.  ER-/PR-/HER2+ Multicentric, lymph node positive.

So I've got a rare, aggressive bc?  Jesus help me.

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