Doctor said I could have Herceptin

Saw Onc. Tuesday. I am age 61, ER/PR --, FISH positive, .9mm tumor, no negative--33 rads, opted for no chemo. A/C recommended --Lumpectomy 12/04.

Onc said I could have Herceptin and if I wanted to put it with Taxol he would. HOWEVER, I had to have an expert--such as from MD Anderson (had consulted with MD Anderson in Orlando for second opinion initially) or Sloane Kettering recommend it AND I would have to pay for the drug up front!
He said to write my congress people to get them to rush FDA approval.

He considered me a very knowlegable person--since I am probably the only one asking for Herceptin in his office--and knew enough--all because of you guys--to ask for Herceptin and that Taxol be tried with it.

He will consider NO alterative therapies. Not even a vitamin pill. He said he has done a lot of studies and there is nothing he would recommend. He would recommend nothing -- certainly no chinese mushrooms--unless the FDA approves it. Said he has seen irreversable liver damage with chinese herbs.

So here I am. No further than I was before. He knew back in December that Hercptin is the key, but won't give it without the backing of the experts, in writing.

Does anyone know of any expert willing to put it in writing?

Adjuvant.com gives me a 76% chance of no relapse with no chemo. I may just settle for that. Certainly would have no risk of chemo side effects if I am among the lucky ones that don't relapse.
Janet/FL

You might try getting approval from your insurance company first. That is what I did and I'm two years post-treatment. I have Blue Cross and they approved it within two days. Keep fighting for it if you really want it.

Bev

Hi Janet-
I live in Florida too-

I have had the exact thing told to me by my onc. He did however write a letter to the ins company (medical necessity) with back-up from data obtained by another onc in Philadelphia. Like you, I could not qualify for the Herceptin trial because my tumor was not large enough. And no docs around central and south florida were willing to give Hercepin to me even if I did pay up front. Since the ASCO meeting in May however, now they are all willing to give it if I pay up front. Although node negative , ER/PR - and HER2 +++ !!!!

I respect your option to opt out of chemo... just remember that AC is pretty effective on fast growing tumors and you are YOUNG!

Eventhough I already completed my chemo and rads, I am certainly willing to lose my hair again for the Herceptin and do more chemo if necessary... I have a 4 and 7 yr old and the biggest child of them all - my 43 yr old husband. I'll be damned if some hag ends-up with him due to my early demise. The chemo is well worth it.

I got 4 different opinions and NEVER "fell in love" with any of my docs... we are just patients.

There is an onc in Sebring Florida that will give it you if you pay upfront. He has offered to me. May hte force be with you!

I have CIGNA, am early stage and HER2+ and they said fine. Their only stipulation was a MUGA scan since it has been discovered that I had some weakening of my heart from my previous Adriamycin (different tumor, opposite breast 4 years ago). The MUGA was fine so I'm starting it.

I just completed an alternative medicine course and am in the process of writing a paper on alt med for breast cancer. The only allopaths who will not work with alt practitioners are the close-minded ones. I'd dump this guy and find some willing to consider that there's a limit to their knowledge and that you know your own body better than they do. Plus, he's focusing way too much on covering his own butt at the expense of yours (in case you decided to sue him for some reason). I sure wouldn't want to entrust my health to someone like that.

Even Medicare will cover HER2 for early stagers now as I understand it, even before FDA approval. I could be wrong about that but think I ran across it in my research.

I just had my first round of chemo yesterday: Herceptin, Taxotere, and Cytoxin and feel fine. Nexium is a HUGE help in calming digestive system upsets. The hair thing is not as big as deal as it may seem. Whatever doc you select, I'd ask about Taxotere rather than Taxol as it's an improvement on Taxol, with less toxicity.

Good luck!