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Old 03-29-2007, 08:21 PM   #1
michele u
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Tykerb cares

I found a website Tykerb cares that you can have your onc fill it out to see if you qualify for free or reduced tykerb. I'm in the process of applying, but don't know if they will give it to me since i'm stage 3. My onc is going to give it to me off label.
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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 03-30-2007, 10:53 PM   #2
Sherryg683
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Hi Michelle, I know you were like me and were leaning towards going ahead and getting on Tykerb with Herceptin as a preventative. What made you decide to go ahead and do this. I am really leaning more towards having my Oncologist put me on it immediately instead of waiting for a reoccurance, just would like to know what your Oncologist thinks about it, mine doesn't really know what to do but has said he would do whatever I wanted. Just concerned about getting an immunity to it and using it up ..i'm so confused...sherryg683
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Sherry

Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year

Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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Old 03-31-2007, 05:54 AM   #3
Sandy H
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Not to confuse you but perhaps, I should share this with what happened to me on Tykerb. I was on it 7 months feeling find than I started feeling very ill. Couldn't explain how or why just felt like I wanted to roll up and die!!! I had been off the Xeloda for a week so knew it wasn't that. I stopped the Tykerb and felt better by the next day and by the third day I was fine. I mentioned that to my oncologist and he said that's the end of that for you, when your body does things like this it is saying it has had enough and wants no more. So no more it will be. I assume I have exhausted that drug. So taking it as a preventive may not be such a good idea where there is not alot of proven info on it as yet. Just something to think about and maybe, talk to the doctor about. Of course, this is only my experience that I am sharing and not trying change anyone that feels they want to take it. Everyone has to do what they are comfortable with. God luck and may God Bless and direct you in making the right choice here. 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 03-31-2007, 06:21 AM   #4
Lani
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Sandy

were you no longer on Herceptin when you had Lapatinib? If not, How long since your last herceptin when you started lapatinib? Thanks!
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