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Old 02-24-2007, 12:05 AM   #1
Chelee
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Sara, This is a good place to post especially since you wanted to know about any clinical trials. But I do know of a few women here that have had to deal with skin mets and they might not see this message. So if you don't get a reply, please jump up to the "Her2 support" board...and for sure you will get a reply. Wish I could help on this one but I can't. But one lady SandyH is very knowlegable about this...she will be more then happy to answer what she can for you. Hang in there.

Chelee
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DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 02-24-2007, 08:55 PM   #2
Bev
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Posted to keep post near the top. Good luck. BB
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Old 02-25-2007, 04:13 AM   #3
tousled1
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Moved to HER2 Forum so hopefully you will get more replies.
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Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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Old 02-25-2007, 02:15 PM   #4
Sandy H
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Hi Sara: This comes from Dr. Lupe Salazar from UW/Seattle. I talked to her in San Antonio and she told me she was working on a trial for skin mets to start up in April. It is a Phase I and a topical application to try and activate the T-cells on the skin. One would have to be off Herceptin. As soon as I get home from Florida I will be giving her a call and see where this is at in the process. I will also put this on the IBC board as well and keep everyone updated on it. She said it would require a trip to Seattle to get started and than be followed by our oncologist at home. May have to make another trip to end the trial she wasn't sure about that. I have already talked to my oncologist about it and he was excited about it. I don't know of any other trials except the Tykerb/Xeloda and Tykerb/Hercetpin. Usually, it requires systemic treatment this being a lymhethetic disease. Please feel free to e-mail me if you have questions and need to talk. Have been dealing with skin mets for 5 years now. I hope this helps. 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 02-25-2007, 04:09 PM   #5
lindaw
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Dear Sara

I am in Australia so we are a little behind with trials etc. Haven't heard of the trial Sandy spoke of but would love to be on it. Will have to wait for it to be expanded to Australia although i think I will try and email the d Sandy spoke of.
I was going to add what i have used but its long andf ongoing and Sandy is in US so it will be more relevant.

Keep us posted as to how you go.All the best.

love
linda
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