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Old 01-08-2007, 06:35 PM   #1
michele u
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all,

this is my opinion only of course, but to all that is stage 4, fight like he_ to get Tykerb. Technology is changing all the time. This oral medication is getting FDA approved for a reason, it must be getting good results. My opinion is that if you get Herceptin and Tykerb, it's a double whammy on the cancer. I don't think the body will get resistant to this, in that our bodies get "resistant" to say an antibiotic. I'm stage 3 and my onc already said i can get it off label if i want. I want to do everything in my power NOW and not later. Tykerb might prevent brain mets. In just that i think we all should look very carefully at getting it. I think some of the trials are giving Herceptin and Tykerb together. I think in the near future HEr2 positive breast cancer might the first type of Breast Cancer to be curable.It has to happen sometime, why not now!!
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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 01-08-2007, 07:41 PM   #2
Christine
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Sherry and all Members....
I can understand your delema. I recently came off Herceptin for rhe last 4 months. I have been NED for almost 6 yearstaking Herceptin has never been a problem for me, except, I began to think maybe I need a break, especially after having fair to normal ECHO's at 50% sometimes then later 66% after not taking Herceptin for 4 months.
My onc really listens to my own ideas on how to persue my treatments. Iam scheduled for my usual 6 months MRI Scans that will help me and my Onc determine my protocol. To begin Herceptin or not is the question.. Tykerb seems to be a great alternative, but on the other hand do I need it? Herceptin has always worked well for me; and I would like to be off to give my heart a break also. A recent echo-stress test showed a slight dysfunction was indicated less volume pumped. Otherwise, my heart had a normal function and size. MY heart Ejection Fraction was normal at 66. Cardiologist was impressed.
At San Antonio this year, it was noted that the dysfunction in the LV takrs longer to rebound than they had previously thought for some.
Hope this helps all who have similar heart issues to go on or take a break.Tykerb seems to be another option for those who are progressing on Herceptin;and those who have brain metastases.


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Christine
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1990, July DX 1.1cm er-, pr-
Lumpectomy, 5U4, radiation
1999, June mets to chest and brain
HER2 3+++, er- pr-
AC, Taxol, Herceptin, Gamma Knife (3 treatments) WBR
NED July 2001
December 2001 - Founded HER2 Support Group
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Old 01-09-2007, 09:57 PM   #3
julierene
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I have wondered the same thing. I have been NED (we think) since Mar 2006. I want to try it just to see if it will do anything to that one last peice in my liver. They say they think it's necrosis... but I sure am curious. I am of the opinion that you should go for it. My past history has been of me begging for stuff and not getting it. So this time, I think I might shop around for a new Onc if he says no. In the past, I was asking for things that really weren't approved yet. So I might wait till it's approved - then do my homework, present him with my stuff, and let him decide. If he still says no, then I will probably shop for a new Oncologist. As much as I love him, I have disagreed with his conservative approach from the begining. I can't stop wondering if I had the Herceptin when he finally let me have the Taxotere - if I would have never had another occurrance. I also wonder if I should have had radiation too... I have never regretted taking anything extra. I have always regretted not taking what I really wanted to take. He was right about Herceptin and my heart... but we got it under control with Lisinopril. So his argument was pretty much invalid. What more do I have to loose? I'm already Stage 4! I already have that weight on my shoulders that IF I had pressed harder to get those drugs it might have made a difference. I don't want to be wondering things like that ever again.
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Jan04: Bilateral Mastectomy at age 28
Initial DX: Left Breast: IDC 2cm, Grade 3, HER2+3, 0 Nodes +, ER/PR-. Right Breast: Extensive DCIS ER-/PR+; Stage 1-2a
Feb04-Apr04: 4 AC, dose dense
Aug 04: 4 Taxotere
Dec 05: Bone and Liver METS; Stage 4. Carboplatin/Taxol/Herceptin. DX with Li-Fraumeni Syndrome
Apr 06: NED, maintenance Herceptin
Apr 07: CA1503=14; masses in liver; Xeloda/Tykerb
Nov 07: NED, Tykerb maintenance
Sept 08: Liver mets again, on Tykerb/Xeloda again, CA=19 and 27
Nov 08: Progression, Tykerb/Gemzar, CA=25
Dec 08: Progression, Herceptin/Navelbine, CA=40, 57, and 130
Jan 09: Progression in bone, recession in liver, Herceptin/Carbo/Abraxane CA=135
June 09: CA27/29=24, chemo break
Sept 09: Progression, CA=24, waiting on clinical trial (4 weeks no treatment)
Nov 09: now have brain mets, trial "on hold", getting 14 WBR treatments starting 11/2/09
Dec 09: possible start on p53 trial
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