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Old 05-25-2010, 09:06 AM   #1
Lani
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hot off the press--targeted therapy in IBC review article

http://www3.interscience.wiley.com/j...TRY=1&SRETRY=0
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Old 05-25-2010, 04:54 PM   #2
Midwest Alice
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Re: hot off the press--targeted therapy in IBC review article

Lani thanks how do I open this, Do I have to sign up or something?
__________________
Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!

1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."

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Old 05-26-2010, 04:12 AM   #3
Ellie F
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Re: hot off the press--targeted therapy in IBC review article

Lani
I am having difficulty also. it says 'session cookie error'
Thanks Ellie
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Old 05-26-2010, 08:55 AM   #4
Lani
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Re: hot off the press--targeted therapy in IBC review article

I am terrible with links

Will try again
http://www3.interscience.wiley.com/c...7284/HTMLSTART
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Old 05-26-2010, 06:35 PM   #5
Midwest Alice
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Re: hot off the press--targeted therapy in IBC review article

Thanks Lani,
I am NED now.. last scan Oct. In the last year I have had 3 onc tell me they will not give me tykerb. I did get my one onc to allow me to stay on Herceptin for 5 years.
My onc said if it comes back i will never be NED again.

My tumor block is still at a local hospital. Did they routenly check for this egfr 2 years ago? Can I have it retested for EGFR?
__________________
Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!

1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."

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Old 05-27-2010, 02:45 AM   #6
Ellie F
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Re: hot off the press--targeted therapy in IBC review article

Hi Alice
I also cannot have tykerb but for bean counter reasons!!
I can't believe that your onc said if it came back you would never be NED again. There are women on this board that have done this and also women at the breast clinic I go to!
Love and positive thoughts
Ellie
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Old 05-28-2010, 12:12 AM   #7
Lani
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Re: hot off the press--targeted therapy in IBC review article

Eliie, are you referring to people with IBC or to people with her2+ breast cancer. IBC may be her2+, but it has a behavior all its own.

I don't really know how many (or if any) of those who post on this board who were Stage IV but are now NED have IBC.
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Old 05-28-2010, 12:14 AM   #8
Lani
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Re: hot off the press--targeted therapy in IBC review article

Midwest Alice--EGFR is not routinely looked for (in fact it almost never is in breast cancer, except for in clinical trials)--they are starting to look for it in Triple negatives as it may be a marker for basal breast cancer (a subtype of TN with worse prognosis) and may even being started to be targeted in TN breast cancer.
What I couldn't tell in this article is whether EGFR was positive mainly in the her2-IBCs or also in her2+ IBCs.
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Old 07-15-2010, 08:10 AM   #9
Leslie304
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Re: hot off the press--targeted therapy in IBC review article

Hi Alice, I'm confused. Why won't they give you Tykerb??
__________________
2009
3-15 Age 48 -found lump
Dx 4/15/09: IBC Stage III w/extensive lymph node involvement HER2+++
5/1/09: Adria/Cytoxan for x 3-no response
6/12/09: Taxol/Herceptin for 1 tx -no response
6/24/09: added Carboplatin to T/H x 3 - no response
7/09 -added F5U -no response
7/29/09: Herceptin/Xeloda/Tykerb no response
8-18-09: 2nd opinion at MDA - IDC not IBC! First Onc disagrees,
BRCA 1/2 Neg
8-19-09: continue on Herceptin/Xeloda/Tykerb-slight response
9-24-09 MRM right breast 10x10 cm tumor! (Huge!) no necrosis - Got clear margins! A miracle!
13 of 18 nodes positive
11-2-09 -12/10 started radiation
12-10-2009 - Finished with radiation!!
2010
1/13/2010-Back on Xeloda x six cycles (have been on Tykerb/Herceptin all along)
4/4/14 - stopped Xeloda/Tykerb one cycle early. Liver enzymes high!
4/20/2010 Clear PET Scan!! NED
6/10/2010 - Finished Herceptin11/8 - Brain METS! CRAP! WBRT only option given. Four mets, separate locations in brain, no SRS
12/10 - Herceptin/Tykerb/Xeloda
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Old 07-15-2010, 03:00 PM   #10
Midwest Alice
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Re: hot off the press--targeted therapy in IBC review article

Leslie, They have many reasons for not giving me Tykerb

onc 1: it will make you sick, bad for you to take if you don't need it, more along that line.
onc 2: There is not any research to say that Tykerb will prolong NED or prevent it from returning after successful treatment with Herceptin. ALSO there is not research to say that an extended time on Herceptin past 2 years Will give you more protection. My feeling is there isn't any research to say staying on Herceptin for 5-10 years Won't give me more protection.

onc 3: My locial onc.. who I love... said.. I go along with the MDAnderson and UI medical school oncs. But... I will keep you on Herceptin because why change something that is working.

I guess we don't know what will work. I am so glad to get on here and learn about all the new research and trials. We just have to stay strong till they come up with the next treatment or a cure.

Love your new picture, Alice
__________________
Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!

1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."

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Old 07-15-2010, 03:32 PM   #11
Leslie304
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Re: hot off the press--targeted therapy in IBC review article

Hi Alice, Good to hear from you! I actually have to post my most recent picture sometime! That one is a 'wig' picture with my sister (as if you couldn't tell we were sisters!) She's been my rock through this. You've got me worried now. My onc took me off all meds as of June 10th. I'm NED right now, but every day that goes by off meds makes me worry. I'm such a high risk case. She has me coming back to her every 4 months. It still feels like forever in between. I want to be off drugs but I don't at the same time. What do you think? I never was able to work out coordination of oncs between MDA and MSKCC. They each want me to choose one or the other and since I started at MSKCC I don't have a local onc. If you were me would you push for another year of Herceptin? It didn't really work for me visibly (didn't shrink the tumor) but she said there was still belief that it could be working on microscopic cells. I'm just not as knowledgeable as you are about it all. It still really freaks me out.
__________________
2009
3-15 Age 48 -found lump
Dx 4/15/09: IBC Stage III w/extensive lymph node involvement HER2+++
5/1/09: Adria/Cytoxan for x 3-no response
6/12/09: Taxol/Herceptin for 1 tx -no response
6/24/09: added Carboplatin to T/H x 3 - no response
7/09 -added F5U -no response
7/29/09: Herceptin/Xeloda/Tykerb no response
8-18-09: 2nd opinion at MDA - IDC not IBC! First Onc disagrees,
BRCA 1/2 Neg
8-19-09: continue on Herceptin/Xeloda/Tykerb-slight response
9-24-09 MRM right breast 10x10 cm tumor! (Huge!) no necrosis - Got clear margins! A miracle!
13 of 18 nodes positive
11-2-09 -12/10 started radiation
12-10-2009 - Finished with radiation!!
2010
1/13/2010-Back on Xeloda x six cycles (have been on Tykerb/Herceptin all along)
4/4/14 - stopped Xeloda/Tykerb one cycle early. Liver enzymes high!
4/20/2010 Clear PET Scan!! NED
6/10/2010 - Finished Herceptin11/8 - Brain METS! CRAP! WBRT only option given. Four mets, separate locations in brain, no SRS
12/10 - Herceptin/Tykerb/Xeloda
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Old 07-15-2010, 06:37 PM   #12
Midwest Alice
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Re: hot off the press--targeted therapy in IBC review article

Hey Leslie, I think it is a real plus you had Tykerb and Herceptin. I think the way it works for Herceptin longer than 1 year is if someone is stage 4 from the get go. They think.. thought ... I was. The spots from my spine are gone... so it was ..or a false positive...we will never know.

Sounds like they are going to keep a close watch on you. If I were you I would want PET every 6 months or so for the first few years. I think they will do that. If something pops up then you hit it again.

Also .. they don't know if 2 years of Herceptin is better than 1 year. There is a study on this very thing but the results have not been published yet.
There is a blood test for tumor markers. I would ask to have that test done now for a base line. Then have it done ever so often to check for changes. Chelee was just talking about this test today. Its 29/27 or something like that.
__________________
Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!

1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."

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Old 07-16-2010, 09:09 AM   #13
Midwest Alice
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Location: Southern Indiana
Posts: 455
Re: hot off the press--targeted therapy in IBC review article

Leslie I didn't answer your question. I would ask to stay on Herceptin for another year. I feel it will not hurt you and it may help.
__________________
Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!

1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."

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