| Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
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12-25-2008, 11:20 AM
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#1
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Junior Member
Join Date: Oct 2008
Posts: 4
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worried
Hi, everyone. I am so glad I found this site. I ask my doctor alot of questions but answers are always the same. I had bilateral mastecomy in late June of 2008. No chemo or radiation. I am er+pr+ and Her2+++++. When I asked for Herceptin as told not without chemo and adding chemo would only up survial by 3% not really good considering side affects. I had a bone scan. I need to take boniva. I feel like a ticking bomb. I am taking arimidex, but feel there is more out there. Help.
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12-25-2008, 12:17 PM
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#2
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Have you gotten a 2nd opinion?
__________________
MA in TX.
Grateful for each and every day....
Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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12-25-2008, 12:43 PM
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#3
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Senior Member
Join Date: Apr 2008
Location: WA State
Posts: 199
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While I don't know all your details, I'd get a second opinion. Herceptin is important for those of us that are Her2+.
__________________
Cindy
L/IDC, 1.2 cm, Stage 1, Her2+, ER+/PR+ at age 48
4/15/2008 Lumpectomy + sentinel node biopsy
Margins neg and Nodes neg (2 tested)
MUGA score 55 on 5/6/2008
Treatment starting 05/08/2008:
Chemo 4 cycles, 3 weeks apart with Taxotere & Cytoxan - Chemo - Done 7/24/2008!
Herceptin for 1 year
Radiation starting in 9/2008
MUGA score 61.9 on 9/04/2008
33 Rads with boost - Done 10/13/2008
MUGA score 58 on 12/01/2008
MUGA score 59 on 3/16/2009
Herceptin for 1 year - Done 4/27/2009
MUGA score 64 on 6/22/2009
All scans - NED 6/24/2009
MRI - NED 11/10/2009
All scans - Still NED 8/25/2011
Still NED 2017!
I am calling this my pink journey
Follow my journey into the pink at my blog here
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12-25-2008, 02:28 PM
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#4
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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I agree about getting a second opinion. It would help if we had more information too. Did they tell you what stage you were? Did you have lymph node biopsies?
Keep us posted.
__________________
Bonnie
Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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12-25-2008, 04:16 PM
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#5
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Junior Member
Join Date: Oct 2008
Posts: 4
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Bonnie thank you for answering. I am stage 1 node neg. high grade dcis with microinvasive pattern. I have seen two doctors both in the same office. You are right about seeing another doctor. When I asked the last one what I should do now. His answer was to make sure I have annual mammograph. When I told him I had bilateral mactomey which I thought he should have already known. He laughted and said well I guess you won't have one anymore. I had to fight to get a bone scan. I have read about a knew drug that helps with bone lost and helps to prevent breast cancer.
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12-25-2008, 05:38 PM
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#6
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Liz, if you look at the signature on my post you can see that we seem to have alot in common. I sought 3 opinions and each one was different! But they really helped me clarify things actually. One onc at City of Hope said I did not need any further treatment, just as you have been told. Someone recommended Herceptin alone. But then I had a Oncotype test done on the tissue. And then the pathologist also found more cancer than he originally thought. So these considerations made me decide to do chemo (4 doses) and Herceptin (one year). One really needs information on which to base a decision and choice.
Regarding the annual mammogram, I will still have them...now an "axillary mammogram" which is an ultrasound.
There are many members here who are more knowledgble than I and I'm sure they will be helping you in coming days when the holiday has passed. You have come to the right place. I am glad you did. Keep the faith.
Bonnie
__________________
Bonnie
Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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01-03-2009, 09:47 PM
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#7
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Junior Member
Join Date: Oct 2008
Posts: 4
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finding a doctor
HI, to everyone. I live in northeast Oregon. I am wondering if anyone has a suggestion on a doctor that I could see. I am thinking of going to the Boise area. The doctors I have seen in Walla Walla Washington, suggest only arimidex as my only treatment. I am stage 1 node neg. I had bilateral mastectomy in late June of 2008. I am er+pr+Her2+++. They feel there is no reason to do chemo. and will not give me hercetin without. Thanks for your help.
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01-03-2009, 10:08 PM
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#8
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Senior Member
Join Date: Apr 2008
Location: WA State
Posts: 199
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Hi Lizocean,
I went to Cancer Care NW in Spokane for my treatment. I too am triple positive, stage 1, and nod neg. I did 4 rounds of chemo and one year of Herceptin. PM me if you like more on drs in this area.
__________________
Cindy
L/IDC, 1.2 cm, Stage 1, Her2+, ER+/PR+ at age 48
4/15/2008 Lumpectomy + sentinel node biopsy
Margins neg and Nodes neg (2 tested)
MUGA score 55 on 5/6/2008
Treatment starting 05/08/2008:
Chemo 4 cycles, 3 weeks apart with Taxotere & Cytoxan - Chemo - Done 7/24/2008!
Herceptin for 1 year
Radiation starting in 9/2008
MUGA score 61.9 on 9/04/2008
33 Rads with boost - Done 10/13/2008
MUGA score 58 on 12/01/2008
MUGA score 59 on 3/16/2009
Herceptin for 1 year - Done 4/27/2009
MUGA score 64 on 6/22/2009
All scans - NED 6/24/2009
MRI - NED 11/10/2009
All scans - Still NED 8/25/2011
Still NED 2017!
I am calling this my pink journey
Follow my journey into the pink at my blog here
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