Outraged at off the label cost of Herceptin

[Val Pfeiffer]

hi Robin--
I have received Herceptin "off label" at almost every stage of my treatment, and it has been approved all the way along! First I received 3 months of neo-adjuvent Herceptin/Taxol/Carboplatin for a Stage 2/3 diagnosis; at that time it was approved only for stage 4 diagnoses. Then I asked to be put on Herceptin after my treatments were over (surgery, 3 more months of Herceptin/Taxol/Carboplatin and 6 weeks of radiation). I am ER/PR negative, so there was nothing else but Herceptin for me. My oncologist agreed to put me on weekly Herceptin and I have since asked to be put on triple doses every three weeks. As far as I know, there is absolutely no protocol for this post-treatment use of Herceptin, other than me reading posts on this board and deciding that sooner or later I would become stage 4, so I'd better keep using Herceptin until something better comes along (so I have to thank everyone on the board for helping me come up with this idea). I plan to stick with this until September (one year). All of this sailed right through the HMO.

My HMO stands behind the decisions made by its practitioners, so if the doc says the patient needs a drug or a certain treatment, they stand by that decision. And I am fortunate because my oncologist takes my suggestions seriously. There is no reason why other plans shouldn't do the same--if they are choosing their providers carefully, they should trust them to make sensible choices for their patients.

Fight for this! If you're bored sometime, ask me about the 80-page document that I wrote to get the out-of-plan radiation that I wanted. It was approved my the HMO because it made sense and because I presented a logical case. If I can do it, you can too!!!

Best of luck to you :-)
Val