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01-30-2010, 10:27 AM
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#1
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Senior Member
Join Date: Dec 2008
Location: Southern Indiana
Posts: 455
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re-test tumor block? for er/ep +
Just reading how the FDA has approved tykerb for use with femara for first line use.
I feel adding tykerb for 3 months would help my chances to stay NED.
What do you all think about requesting my tumor block be tested again to see if I can come up weekly er/pr +? I had a rather large tumor and tumors can have different reading in different parts. I want them to test another part ofmy tumor. Plus my tumor looked like two at first. One a round regular type and the other a long sheet looking thing.
Is this a good idea or is my head in the snowbank in the front yard?
http://www.reuters.com/article/idUSN2923761820100129
__________________
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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01-30-2010, 01:58 PM
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#2
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: re-test tumor block? for er/ep +
If you can get your insurance to pay as Tykerb/Femara is for metastatic disease (first line meaning the first time treating - the first thing tried). I did not think you had recurred.
__________________
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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01-30-2010, 02:29 PM
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#3
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Senior Member
Join Date: Dec 2008
Location: Southern Indiana
Posts: 455
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Re: re-test tumor block? for er/ep +
Thanks for responding Becky.
I have not had a recurrence true,
I have never been out of treatment. I have been on chemo or herceptin all 22 months so I am still treating round one.
So I am guessing my window of opportunity has closed for calling it a first line treatment.
If my onc wants to give tykerb to me and my insurance will pay for it I can take it? This is called off lable?
__________________
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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01-30-2010, 03:21 PM
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#4
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Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
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Re: re-test tumor block? for er/ep +
Might be a good idea to look into it. Exposure to Herceptin can boost ER activity. ER/Her2 crosstalk (combination therapies etc): http://her2support.org/vbulletin/showthread.php?t=38998 |
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01-30-2010, 04:27 PM
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#5
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Senior Member
Join Date: Dec 2008
Location: Southern Indiana
Posts: 455
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Re: re-test tumor block? for er/ep +
Thanks Rich,
I understood some of what I read.
My onc at MDAnderson moved to a new hospital in another far away hospital...so... I have an appt with a great onc at IU simon Cancer Center.( 3 hours North)
I have always felt I needed to take 3 months of Tykerb but never had a serious conversation with an onc.
I also want to find out how the her2 serum test may help to moniter.
From what I read:
Sounds like the tykerb works on the Her1 pathway.
Herceptin may cause the cancer to turn on\ the ER/PR to +.
__________________
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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