| Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
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08-12-2007, 02:17 PM
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#1
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Member
Join Date: Jun 2007
Posts: 13
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lapatinib
Ladies, could you please share your knowledge.
I'm on herceptin currently, I had 5+ lymph nodes, no distant methastasis found for now. I'thinking about adding lapatinib to my treatment. It is not approved for non-methastatic cancer in the UK where I live so it is a big challenge and a big expens trying to get it. Would lapatinib + herceptin be more effective than herceptin alone? Would it be reasonable to do lapatinib after herceptin finished?
Thanks. It is ridiculuos that I ask you about it instead of asking oncologists but they are just quoting NICE guidelines in their replies to me and sound like a prerecorded message "not proven not proven". I don't trust them in this matter as NICE concerned more about costeffectivnes than about my personal chanses to survival.
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08-12-2007, 09:27 PM
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#2
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Lapatanib isn't really approved for non metastatic disease in the US , either, although some on this board have fought for it and are getting it. There is really not any data on lapatanib + herceptin, although trials are ongoing in this. So the "Not proven, not proven" is what I hear from my oncologist as well, and she is a very well respected doc.
There is some concern that lapatanib also might have cardiotoxicity, so combining it with Herceptin might be worrisome without more data.
If you're feeling strongly you want the lapatinib, your best bet might be to try and get it in a clinical trial setting. That would at least help the "not proven, not proven" problem!
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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08-13-2007, 05:27 AM
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#3
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Senior Member
Join Date: Dec 2005
Posts: 148
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Read ALTTO trial. Just google ALTTO Breast cancer trial.I think there is some pre clinical evidence that suggest synergistic effect of Herceptin + Lapatininb. But you should also have a cardiologist on the team and take special care of heart with Pranayam(deep breating) and Yoga
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08-13-2007, 05:47 AM
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#4
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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__________________
A Proud webmaster to the internet's most informed, educated, COMPASSIONATE and caring group of breast cancer survivors.
Illegitimi non carborundum
My Album
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09-05-2007, 05:46 PM
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#5
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Senior Member
Join Date: Aug 2007
Location: Silicon Valley, CA
Posts: 76
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Lapatinib/Tykerb as preventive treatment...
Hi,
I have metastatic bc, so for me, the cat's already outta the bag, and I'm on Herceptin plus Tykerb b/c the Herceptin seems to be still keeping my mets stable from the neck down, while I've had 3 brain mets, and the Tykerb seems to have a better shot at keeping any more from growing there.
From my point of view, I would NOT take Tykerb as a preventive drug. It is NOT, for me at least, easy, like Herceptin (other than that it's in pill form rather than requiring an infusion every 3 weeks. I have an insanely itchy scalp sporadically, muscle cramps, diarrhea that keeps me within 50 feet of a bathroom at all times some days, and a rash that looks like acne on my chin. Plus, it's ungodly expensive, still quite unproven longterm (the Phase III clinical trial was, I think, only held over 1-2 years) for either effectiveness or cumulative damaging side effects. If I didn't fear multiplying brain mets and having to undergo whole brain radiation and/or an Omayya Reservoir to pump chemo directly into my brain, or if I had to pay for this drug out-of-pocket, there'd be no way I'd compromise my QOL by taking this med.
Just one HER2neu+++ bcmetster's experience - others' mileage may certainly vary...
Sandy in Silicon Valley
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09-06-2007, 05:29 AM
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#6
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Member
Join Date: Jun 2007
Posts: 13
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extremely greatfull to your replies
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