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Old 03-16-2007, 11:20 AM   #1
eileen
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Do all HER2+ eventullay metastasize?

I was diagnosed in 10/04, had a lumpectomy in 11/04; stage 3, her2+ with 7 positive nodes; chemo, radiation & herecptin in 2005 & am taking arimidex. I Currently there are no signs of cancer & I feel good physically. I am terrified that my cancer will return or spread to my other organs. Does anyone know if all her2+ cancers with node involvement eventually spread? I had the best possible treatment and am wondering if there is anything else I should be doing to prevent my cancer from spreading?

Eileen
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Old 03-16-2007, 12:10 PM   #2
Becky
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Absolutely not and the use of adjuvant Herceptin puts you on the same playing field as those who are the "regular" ER/PR+ but not Her2. Her2 has more chance of a relapse but Herceptin evens out the field.


I have ER/PR negative friends in my local bc support group. One had 14 positive nodes and the other 9. The one with 14+ nodes was cancer free for 16 yrs and passed away from heart trouble recently. The other with 9 nodes is at 20 yrs. Both admitted that they might have been Her2 but they didn't test for it then. In any case, they might have even been triple negative (this also doesn't have good prognistics) and they are here and so will you.

Continue to take care of yourself and walk or exercise. And SMILE as much as you can.

Have a nice weekend
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Kind regards

Becky

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
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 03-16-2007, 12:16 PM   #3
KellyA
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Becky,


I just have to tell you how much I love reading your posts and seeing your cheery face on this site. :-) In addition to being very knowledgable, you are always so positive and upbeat and just OOOZ happiness. You always make me smile. Thank you.

Love, Kelly
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dx'd 05/06, 37 years old
er/pr-, Her2+, grade 3
double mastectomy, immediate reconstruction- implants
Stage 2b, 2 tumors- 2.2 cm and 0.6 cm, 3/5 + nodes
all scans clear
genetic testing- negative
06/06 began dd A/C x 4, 12 weekly Taxols w/ Herceptin
30 rads
Herceptin weekly x 1 year
Herceptin completed 08/07
Port removed 12/26/07 MERRY CHRISTMAS!!!!!!
05/17/08 Two year anniversary NED

"We gain strength, courage, and confidence by each experience in which we really stop to look fear in the face... you must do the thing that you think you cannot do."

-Eleanor Roosevelt

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Old 03-16-2007, 12:28 PM   #4
Mary Jo
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I agree with Kelly. I love reading your posts. You are a wealth of knowledge and your positive attitude is contagious. It's nice having you back. Have missed your posts on here.

I posted something a few days ago titled "could you please explain" that I would appreciate your response on.

Hugs and smiles back at ya becky.

Mary Jo
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"Be still and know that I am God." Psalm 46:10

Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

17 Years NED

<>< Romans 8:28
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Old 03-16-2007, 08:00 PM   #5
eric
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I triple that Kelly! You're wonderful. Eric
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Old 03-16-2007, 10:33 PM   #6
Andi
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Make that a quadruple from me!
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Andi
-- ------------------------
Stage IIIC, 17 of 20 Nodes +, E+, Her2+++
Diagnosed 6/30/05
Lumpectomy 7/13/05
Dose Dense A/C x 4
Weekly Taxol + Herceptin x 12
Remainder of year Herceptin Every 3 weeks (completes 9/13/06)
Radiation completed 2/28/06
Currently on Tamoxifen
Dec 06 - Pleural effusion treated with pleurodesis
Now er/pr-, her2++
1/07 started weekly Navelbine plus Herceptin
Discontinued Tamoxifen
4/27/07 CTshowed progression
5/01/07 Began Tykerb/Xeloda + Zometa
5/22/07 Stopped treatment due to great progression
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Old 03-06-2008, 08:08 AM   #7
SherryG
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Becky,
Thanks for being so positive. I am a newcomer who was just diagnosed 10/07 with HER2+, Stage 2, No nodes involvement. I have finished 4 months of the tough chem and am now undergoing 12 weeks of Herceptin and Taxol, followed by 10 months of just Herceptin infusions. I, too, am terrified that this cancer will return, but your message was so uplifting. It gives me hope that I will have 16 to 20 years of cancer free life. Thank you for being a positive voice for the fear so many of us have.

God bless you and please stay on the boards....we need you,
SherryG
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Old 03-06-2008, 08:33 AM   #8
DonnaD
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Eileen,
We all have bad weeks. That is why this site is so important, whether you have had a reoccurence or are dancing with NED others really understand. I agree with Hopeful, many who are NED are busy getting on with their lives. That is one reason I try to stay active on the site. So many have helped me during the last 19 months I hope in some small way I can help others. My mission is to tell as many people as I can about this wonderful site and all the knowledgeable sisters we have here.

Take a deep breath and let the information your just rec'd settle in. If you have any questions about your most recent results and options ask away. There is someone here who will be able to help!

I finished treatment in Dec. I still think about a reoccurence but not nearly as much as I did last year.
Look at you, you are 3+ years out. You are doing great!
Donna
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Donna
Crystal Lake, IL
Diagnosed 8/4/06 at age 54
Lumpectomy 8/30/06
Stage llA, grade 3, ER/PR-, Her2++
1.7 cm tumor, 1+ lymph node out of 9
Completed 4 A/C, & 4 Taxol with Herceptin
36 rads completed 5/16/07
Mammograms, 7/07 clear
fractured ribs in radiated area 10/07
Finished Herceptin 12/27/07
Mammogram,CT,tumor markers 1/08 - small lung nodules in radiated area, repeated tests 3/08 stable
Mammogram,CT ,tumor markers 6/08 stable
NED 2 years!!
3 years !!!
4years!!!!
4 years, 10 months and 8 day NED, calling it 5 years!!!
Official 5 years 8/30/2011
8/31/ 2012 - 6 years!!!!!!

Last edited by DonnaD; 03-06-2008 at 02:08 PM..
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Old 03-06-2008, 11:44 PM   #9
harrie
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First of all ...... Welcome Back Becky!!! So happy your are back on board!!

Goops, in regards to your question about where to find a recurrance score. Adjuvant.com is the place where you can find a recurrance score. In fact Dr. Pegram gave me 2 printout results, one which included the HER2neu and one without. It definitely helped me make that decision to do the chemol
Maryanne
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*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 03-06-2008, 11:57 PM   #10
harrie
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For Becky

Becky, I hope your buddy comes back soon too because she is also very much missed.......
Maryanne
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*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 03-07-2008, 06:05 AM   #11
goops
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Thank you Harrie - I will check it out!

I got some type of a financial place - could you please repost the link Harrie. Thanks
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May 2007 - Stage 3A, 12 positive nodes, her2 positive
July 2008 - Stage 4 - Liver Mets

Help my city grow:

http://goopsville.myminicity.com/ind/
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Old 03-07-2008, 12:08 PM   #12
StephN
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Unhappy

Hi Harrie -
Sorry to point out that those posts from Becky are from one year ago.

She even took her pic off and put the hamster's.

Maybe she is training for a marathon?
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 03-07-2008, 01:18 PM   #13
Hopeful
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Goops, I think it is adjuvantonline.com

Hopeful
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