Her2 Positive and need info??

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Tricia Keegan
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Re:Her2 Positive and need info?? - Friday, July 23, 2010 3:45 AM
Hi Redwolf,

Not so rare or aggressive since the advent of herceptin!

There are many long term survivors of her2 bc now and if you check out www.her2support.org you'll see many more and learn all the latest info and updates on this type of cancer:)
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?? - Friday, August 13, 2010 3:37 PM
I was shocked and saddened to learn of the passing last night of a dear friend and wonderful webmaster/founder of the her2support site.

Joe passed from lung cancer which he had bravely battled for months, but did'nt want to burnden the members by telling them of his own battle. 

This wonderful man has helped so many including myself and I have no doubt saved a few lives along the way by passing on reliable information on the latest drug trials and tx for her2 cancer.
The site has members from all over the world, and today tears are shed in many countries for this amazing gentleman and advocate. 
His legacy lives on with his creation of the her2 site, but we'lll miss him greatly.

RIP Joe and thank you. x
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?? - Saturday, August 28, 2010 7:12 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

Tricia Keegan
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  • Joined: 1/1/2005
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Re:Her2 Positive and need info?? - Thursday, September 02, 2010 3:03 PM
Hi her2+ ladies,

I just finished reading "The making of Herceptin" by Robert Bazell and can't recommend it highly enough, it's a must read for all her2 er's! :)
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

Reading Mama
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Re:Her2 Positive and need info?? - Wednesday, November 10, 2010 5:25 PM
Hi Tricia, I just wanted to say a BIG Thank You for all the information you post and all your answers to my other postings in the chemo threads, this site is lucky to have you and others like you!
I just found out upon re-testing that I'm HER2 positive, so I will be checking out those websites that you recommended.  I'm scheduled for 4ac and 4 taxol, dose dense, I thought the herceptin would start afterwards, but we haven't discussed it yet, since we just found this out.  I see some have the Taxol at the same time as the Herceptin?  Anyway, the oncol did mention it would be for a year, every 3 weeks with lots of heart monitoring, I guess I just assumed it would start after the Taxol or even after my surgery, which is after the AC and the taxol.  More to learn...
8/4/10 found lump, 8/13 mammo&us, 8/31 biopsy
9/7/10 dx@ age 43 -  IDC - 2cm (4.6cm on MRI!), ER/PR--, HER2+, Grade 2, Likely Stage IIIa.  BRCA negative!
Neoadjuvant chemo - AC-dose dense, 10/10, 4tx - DONE!
Taxol - dose dense - 4tx - 12/10 - DONE!
Lumpectomy & ALND - 02/16/11 (No cancer left!)
Rads x34 - start April 2010
Herceptin for 1 year - started 12/7/10
Northern NJ, mom to dd(11) and ds(7)

Tricia Keegan
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Re:Her2 Positive and need info?? - Thursday, November 11, 2010 5:00 AM
Hi Reading Mama,

Thank you, and I'm so glad some of the info will help you with this diagnosis.

Your onc may switch to twelve weekly doses of taxol along with herceptin and then continue the herceptin for a year, as I had and this is the usual for her2+.

As I said earlier we're all very fortunate to have this drug which has made such a difference to me personally, and hopefully will for you too:)

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

mary l
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Re:Her2 Positive and need info?? - Thursday, November 11, 2010 9:16 AM
Good morning LuCinda.  I was on Herceptin for 5 years.  I went every other week only stopping when my heart tests showed that is was affecting my heart.  This wonderful drug saved my life.  I have inflammatory Breast Cancer and was stage IIIB. Asfter all the normal chemos, surgery and radiation my cancer came back after 9 months.  I was started on Herceptin and Carboplatin.  The red inflammatory cancer rash stated fading in 3 weeks and was gone in 3 months.  I stayed on Herceptin every other week only stopping when my heart needed a rest.  I have been off Herceptin and cancer free for 3 years this Oct.2010.  My heart is completely healed and my  Cardiologist has told me that if my cancer would reccur I can go back on Herceptin.  I am an 8 year survivor and I LOVE HERCEPTIN.  Best wishes.   Mary L
Diag. Oct 2003 with 6mm mass, IDC grade III ductal carcinoma in-situ, Inflammatory Breast Cancer stage IIIB, Her2+++.   I had A/C followed by Taxotere (only had 2tx as I had heart problems from it); Left Mastectomy followed by 35 rads.  Recurence in 9 months as skin mets to mast. site. tx Carboplatin/Herceptin,  stayed on Herceptin every other week for almost 4 years only stopping when my ejection fraction would get too low. off herceptin & ned 3 years in 2010

SherylKMM
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Re:Her2 Positive and need info?? - Thursday, November 11, 2010 8:49 PM
Mary,
Wow!  Your story really touched me.  I have tears even now reading about your success.  Thank you Tricia too for posting such important information.  I'm so grateful for all of you and for you all taking the time to post your experiences and stories.
Hugs,
Sheryl
 
Diagnosed:  August 2010 through routine mammo 
1 cm, 5 lymph nodes removed
E+, P+, Her2-
Onco-type score 17
48 years old, single mother of a 10-year old
No family history; no risk factors
Yes, I'm shocked

Bigger shock: this tiny tumor metastasized in Fall 2015 while on aramidex to advanced stage IV in liver, pleural linings of both lungs, spleen, and ascites in abdomen.  

Tricia Keegan
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Re:Her2 Positive and need info?? - Friday, November 12, 2010 5:21 PM
Thank you Sheryl:) 

Glad it helped a little!
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

rach092610@gmail.com
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Re:Her2 Positive and need info?? - Friday, April 13, 2012 8:17 PM
I just found out from my doctor over the phone that I am HER2+, E+ P+.. I am overwhelmed depressed, worried plus a little confused by some of the words used...but I am trying to learn....... If you are HER2+ do you automatically get chemo Do you get the chemo before the mastectomy and will I have to have radiation as well???? I would really appreciate advice, facts, similar stories.......the good, the bad, the ugly....just the facts ma'am lol. Please share what you can to make this seem easier to bear.

Tricia Keegan
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Re:Her2 Positive and need info?? - Saturday, April 14, 2012 7:18 AM
Hi Rachel,
 
In general her2+ is best treated aggresively which means chemo but some studies are showing that in time herceptin alone may be possible to treat this but its a little early to say for sure. The Herceptin is not a chemo but a targeted therapy that hits straight at the her2+ cells and has very few side effects for most.
 
Some people have chemo first to shrink the tumour before surgery so a lumpectomy may be possible rather than a mastectomy, in general radiation is always done after a lumpectomy and sometimes after a mast depending on the views of the Dr. It really is all do able although no picnic and if you read back on this thread you'll see a lot of success stories and I replied more to you on the introduce yourself forum.
 
Please feel free to ask any questions or send me a PM if you need more help!Pals
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

nikkiw1973
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Re:Her2 Positive and need info?? - Saturday, May 27, 2017 9:51 AM
Hello all. Does anyone have any experience with Kadcyla?

Tricia Keegan
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Re:Her2 Positive and need info?? - Saturday, May 27, 2017 1:41 PM
Hi Nikki, 

Please try our closed facebook group which is far busier where you'l find many others that have taken this drug https://www.facebook.com/groups/1588741974737166/?ref=bookmarks 

Also there are some members on www.her2support that have taken it too. 



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

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