Tykerb Discussion with my onc

[Rupali]

Hi all,
Let me start first giving a history about my case:
Diagnosed December 2004.
9 cm tumor with 12 out of 22 nodes positive, Stage 3C
RIght breast mastectomy
Followed by dose dense 4 AC and then 4 Taxol
Followed by 33 radiations
Followed by 2 years of Herceptin and Tamoxifen
ER+(10%), PR+ (10%), Her 2+++
Currently NED
Stopped Herceptin March 23rd, 2007

So my husband and me went with this dilemma to my oncologist appointment yesterday to see what more we can do and what to do about Tykerb.
I am following up with 2 oncolgists, one is an oncologist at a leading cancer center in Boston and the other is a community oncologist. I do that because the community oncologist is more easy when it comes to writing prescriptions to try and get off label medicines, like we got it for herceptin initially.

SO my community onc tried to getme tykerb off label but my insurance CIGNA denied it as the community onc had put a prescription just for Tykern and not Tykerb and Xeloda.

When we met the oncologist in Boston yesterday our key point was that even if insurance was not going to pay for Tykerb, should we stil try to get it and take it. And if yes then for how long.
Well, due to legal issues he did not answer clearly but my husband was able to lead him into discussions and finally this is what my husband proposed and he thought that my husband was making sense (another way to say yes but still not prescribe it)

SO the final cocktail was:
6 months of Tykerb exactly like the active arm of Teach Trial together with a maintenance dose of Herception once every 3 month.

Now the big problem we are facing is that how do we get our hands on Tykerb. ANy ideas?

A point my husband brought up in the discussion was that if they are doing a TEACH Trial then that means that someone has some scientific evidence that TYKERB works well even without being in cobination with Xeloda, else why would they invest millions of dollars and run it in 32 countries.
So even though noone knows for sure but stil there is at least a more than 50% chnace that Tykerb alone works.

I would like to get your feedback on this and also try to understand if someone is on this kind of protocol that I mentioned above.
Also how do we convince the community onc to just prescrive Tykerb alone or how can the community onc convince insurance to just pay for Tykerb alone.
Is anyone alone getting Tykerb, if yes then how did you go about it.

So many questions. Please help ....