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Old 11-22-2006, 08:54 AM   #1
aviv
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Looking for Lapatinib

Dear bcmets members,

We just learned that Gemzar doesn't work for mom's mets...
Even though liver mets are somewhat controlled, brain mets keep progressing, and it has come to a situation where it's impossible for her to continue tolerate the headaches, without heavy amounts of steriods.
Basically, after we stopped Herceptin, nothing has been really helpfull. CA markers are rising rapidly... 3 weeks ago ca153 was at ~500, and two days ago we got result of 1066.
We're so worried.

Many pointed me to Tykerb / Lapatinib.
There have been a number of success stories around it- But since it's not registered yet, there's no way to get it / buy it, other than in a clinical trial.

We're based in Israel, and for mom's indication, there's only 1 valid tiral protocol. She may fit to this trial, but she has to (according to the trial protocol) have used Taxotere sometime in the past- and since she had never received Taxotere, getting it now is a pre-requisit for participating in that trial. The problem is that our onc is afraid that Taxotere might be too toxic, too toxic for mom to handle. so we're in a huge dilema... on one hand, there's nothing really helpfull to offer- on the other hand, if we want to get Lapatinib, mom has to take at least 4 cycles of Taxotere.

I tried talking to GSK, in order to buy the drug- the doctors there were very nice, but said there isn't really any way to get Lapatinib other than enrolling to that trial.

I'm really desperate. I know it's not common, but I wanted to ask the people on the list- Does anyone have any leftovers of Lapatinib, something she doesn't need anymore for whatever reason, that can be sent over to us? I would really appreciate if you can let me know.

Many thanks in advance, Aviv.
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Old 12-04-2006, 02:57 PM   #2
RobinP
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Aviv,

Lapatinib is suppose to get FDA approved here in the US by Feb. 2007. I know that is a few months off, but perhaps that does give you something to shoot for.
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2002- dx her2 positive DCIS/bc TX Mast, herceptin chemo
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Old 12-04-2006, 06:20 PM   #3
tousled1
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Aviv,

Taxatere is a harsh chemo but tolerable. Usually when you receive it you are given Decadron (steroid) as a pre-med to cut down on the side effects. I had 4 rounds of it and it really does help shrink tumors. The worst side effect is neuropathy. Perhaps you can talk to your mom's oncologist again and see if he/she won't prescribe the Taxatere. If your mom does start the Taxatere and has problems it can always be stopped. I'll keep your mom in my prayers.
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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 12-09-2006, 11:00 AM   #4
sitkarose
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Lapatinib(Tykerb)

This medication is available NOW under the compassionate usage program until approved for use in 2007. I know because I just got on it after lots of you know what. You must go to a site that participated in the original study or has applied to participate in the CUP. If you need further information about where to go let me know. The closest place for me to go was Sioux City, IA - 140 miles away but new centers are openning daily.......you just need to call and find out who is offering the program. There are 2 requirements ----Herceptin no longer works as evidenced by disease progression in soft tissue (bone does not count) and you cant have brain mets..but not to worry there is a program for those who do have brain mets. I can't believe that I was wishing for disease progression in nodes or some other organ....but the nurses at the center said it was well worth getting this medication. It is taken along with Xeloda which is also an oral medication. Please email if interested in any more information. mjhaug@yahoo.com. There are people going to sioux city from all over the us and europe but there may be a center closer. University of Washington and Swedish have applied and may be taking patients now
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Old 04-10-2007, 04:55 PM   #5
showmecn
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Hi,

We've similar situation, How could we get the Tykerb. Sir,If you have the way to get this drug, please tell me as well.
my email: laijun.zhou@gmail.com

Thank you very much!

laijun Zhou
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