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Old 11-16-2006, 06:58 PM   #1
michele u
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triple negative

I have a friend that is triple negative. And also Her1 negative. What are they doing for these women? She received 4 AC 4 taxol and now she will have radiation. She was going for her mastectomy and she told them she wanted the other off because she was getting the same arm pain in that one as the other. And they DID find cancer in the other breast. Her onc told her he didn't know what to do with her next.
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Michele Ulmer

dx: August 2003 stage 3b 35 pos nodes ER/PR neg Her+
4 AC 12 weekly taxol
one year Herceptin in trial
35 rad tx
vaccine trial Seattle
NED
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Old 11-16-2006, 08:00 PM   #2
Sandy H
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Michelle as far as I know there is nothing for these triple negatives. I lost a friend last year who was IBC, triple negative and once she completed radiation she passed away 5 months later. After rads she was on nothing. She told me she was doing great 1 month after rads and 2 months later she tells me her cancer had spread to bone and all organs. They did put her on chemo for pain but she knew it would not help the cancer. She was told there was no maintenance for her. I think this is being looked at and we may hear something in San Antonio next month. hugs, Sandy
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Dx. 03/01, Rt. IBC
AC/Taxatere
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
Tykerb/xeloda
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Doxil
Updated 05-07 Scans show no bone or organ involvement we shall see!




I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
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Old 11-16-2006, 08:14 PM   #3
lexigirl
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Hey Michelle,

I am sorry to read about your friend having to go through this. I have read that they are finiding that Avastin seems to work well with triple-. I thought I had also saw that they were using Tykerb in trials. Hopefully with the surgery alone she will be fine. Let her know that I am thinking of her and we are all in this fight together.

Hugs and Prayers,
Lexi
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Old 11-17-2006, 05:41 PM   #4
michele u
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Lexi,

they checked her Her1 and it was neg also. Tykerb helps Her1 and HEr2 and she is neither. Avastin might help. does anyone know is Avastin for VEGF and is that a part of the HER family or not?
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Michele Ulmer

dx: August 2003 stage 3b 35 pos nodes ER/PR neg Her+
4 AC 12 weekly taxol
one year Herceptin in trial
35 rad tx
vaccine trial Seattle
NED
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Old 11-17-2006, 09:26 PM   #5
Bev
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Michelle,

I just recently lost a triple neg freind. She did AC + T + rads. Lani had some suggestions including Tykerb. I was trying to figure out how to copy but failed, a recent continuing education course on clinicaloptions.com. on triple negs. You really have to work to get the info out of this site but it may be worth it. BB
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Old 11-17-2006, 09:32 PM   #6
Lani
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VEGF is not part of the her family

I know Targeted Molecular Diagnostics includes VEGFR (the receptor) in its list of molecular targets that a tumor can be tested for. Perhaps her oncologist can have her tumor sent in for testing. They also have two or three different ways of testing for EGFR1 (same as her1) Perhaps it should be retested as there are more and more papers coming out about strategies targetting EGFR
in triple negative breast cancer.

Perhaps there is also a vaccine trial of some sort...
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Old 11-18-2006, 08:48 AM   #7
Rupali
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Michele,
First of all tell her to not loose any hope.
Secondly, if the conventional medicine has nothing to offer, that does not mean the battle is lost. You need to ask her to look into alternative medicine. Things like Wheatgras juicing or more better going to either Wheatgrass resorts and spend a week there and then get onto Yoga, wheatgrass and then vegetable juicing. Together with this you need to ask her to get in touch with an Integrative Medicne practioner immeditely or better if she can plan a trip to Cancer Treatment Centers of America in Illionois.
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