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Old 10-12-2009, 12:00 PM   #40
Darlene Denise
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Join Date: Aug 2008
Location: Virginia Beach, Virginia
Posts: 145
Re: Insurance Company Does Not Want to approve TYKERB

Shelia: Would it be worth dropping the Herceptin, for now, going with the Xeloda & Tykerb to see if you get a result? Some gals get remarkable results on just the Tykerb Xeloda, you may be one of them. Continue the battle in the meantime and hopefully get what you want. If Tykerb Xeloda doesn't do the trick alone then maybe that could be additional info to support another appeal. Remember biological agents usually work better with a cytoxic agent which is probably why they don't want to approve the Herceptin Tykerb only combo.

As I understand it, you can always go back to Herceptin and it will work as well as when you left it.

Just some thoughts, any other chemos you are willing to try with Herceptin instead? Perhaps reserving Tykerb for use in case of brain mets? (I have them and I highly unrecommend them. ) Hope you never do. I think even in the next few months data will begin emerging supporting more widespread use of Tykerb and you may have an easier go of the approval then.

Hopefully TDM-1, Super Herceptin is around corner for all of us!

I am on Tykerb Xeloda and Herceptin for brain and liver since June. It's been a tough combo for me with many side effects and dosing modifications. My modest dosing is helping the brain but the liver is still an issue. Seems the Xeloda is what is needed to shrink the liver lesions so I just upped the dose this week.

Don't let this frustration rob you of good Grandma time and there seems to be other options, maybe this door isn't opening for a reason? Like you, I always still want to know the damn reason!


I'll be hoping you get what treatment you really want and are most comfortable with.

Wishing you well...Darlene
__________________
12/14/07 IDC ER- PR- HER2+++ LIVER METS AT DX CONFIRMED BY LIVER BIOPSY
01/14/08 2 AC TREATMENTS-NOT WORKING
02/04/08 13 TAXOL, CARBO, HERCEPTIN TREATMENT-EXCELLENT RESULTS!
05/12/08 HERCEPTIN EVERY 3 WKS
08/22/08 BRAIN METS! 8 <5MM
09/17/08 CYBERKNIFED BRAIN METS
10/20/08 BRAIN METS SHRINKING
12/29/08 BRAIN SCAN SHOWS 1 LESION GONE, 7 SHRINKING & STABLE, 1MM ? SPOT
01/16/09 LIVER REOCUR-XELODA/HERCEPTIN
03/02/09 BRAIN SCAN 2 LESIONS GONE, 5 STABLE, 1MM ? SPOT STILL A ?
3/27/09 REGRESSION OF 2 LIVER LESIONS XELODA & HERCEPTIN
06/08/09 STUPID BRAIN HAS 3 LESIONS
06/29/09 CYBERKNIFE
07/01/09 LIVER REGRESSION NO NEW METS
07/07/09 TYKERB XELODA HERCEPTIN
11/11/09 GEMZAR/HERCEPTIN FOR LIVER PROGRESSION
03/22/10 BRAIN MRI GOOD-3 SMALL NECROSIS LEFT FROM ORIG 11!!
03/26/10 CHANGE TO NAVELBINE/HERCEPTIN 3 LIVER LESIONS PROGRESSING IN SIZE
05/21/10 NAVELBINE/HERCEPTIN WORKING!
07/19/10 GOOD BRAIN MRI
08/20/10 LIVER PROGRESSION
09/08/10 TDM1 - NASHVILLE TN
01/10/11 LIVER RESPONDING TO TDM1
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