Outraged at off the label cost of Herceptin

[RobinP]

Hi Joni,

First off, are you sure you are her2+? If you are, then when you have a her2+ metastatic breast cancer relapse, you should get chemotherapy and Herceptin.Taxol is one of the best chemotherapy drugs for her2+ breast cancer and it works together well with Herceptin. In fact, they are snyergistic which means together they are stronger at destroying cancer cells than either alone. You might also get an anthracycline like Epiribucin as a chemotherapy drug which is effective against more aggressive breast cancers like her2. I suggest that you discuss these drugs with your oncologist. If he is not already guiding you in these areas, I question his ability to manage your breast cancer care. I've had to replace physicians many times throughout my cancer experiences due to lack of proper guidance. You must fight for your life. Keep us posted on these boards. You should start your own topic next time addressing your questions to everyone here who are more than willing to help. I am only early stage and have less knowledge about the her2 relapse and treatmnts than some of the metastatic her2 gals and husbands here. Keep us posted.

Lani,
Thanks for the information!

[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