I am starting Herceptin/Taxol am Stage 1 !!

I have been unhappy with my "brilliant" oncologist. Very good credentials but unwilling to do anything not recommended by the large breast cancer centers. And if I got Herceptin, (he wouldn't look for a recommendation for it, I would have to get MD Anderson or Sloan-Kettering to recommend it), I would have to pay upfront and fight it out with my insurance company. I decided to interview oncs and went to my local hospital based oncology clinic. I am Stage 1 -- er/pr negative HER2/FISH positive, no node involvement had lumpectomy, December 2004,radiation treatment and turned down A/C chemo. The onc at the clinic is a fill in until they can find a replacement for one that just left to go to Sloan-Kettering. He was retired, probably in his late 70's. He said when he first began there were 7 drugs to give and now there are 35. I was told by a doctor to find an oncologist that had been around awhile and that they would be much more willing to treat with what they thought was best--not just what the accepted protocal is. Seems they were right!

He asked if I were against chemo and I said, no. But I wanted the right ones. He said Herceptin really seems to be the one I would need, based on the May conference (I was happy to see that he had kept up with the news from the conference) and I said "Yes," that I would like to get Herceptin but couldn't. He said that it may should include chemo, and I said yes, Taxol or Taxore--I was aware of that and willing to do it. Then, he said--he would get it for me and that there should be some trial for it. But based on this group and my previous oncologist, I was doubtful. At that point he brought in a woman from "Research" and she said she would see what she could find. I told her that I didn't think she would find anything but that I have been told that Genentech had a program to pay if my insurance wouldn't.

Well, it didn't take her long to find out that there was no trials but that there is something called, "Single Point of Contact" that will fight for my BC/BS to pay for it and if not Genentech will pay for it. It seems to good to be true but I am going to proceed as if this will happen!

When they said I could pick the date for the infusion, I picked August 8. They would have started next week but I need time to think and see if this is all just a dream! I remembered, from info on this group, that I needed a MUGA scan and called the clinic and the doc said it was a good idea--that it was better than an echo test. So that is scheduled for this Wednesday.

I also took the researcher information about the Bayer Serum test to see if she could get that for me. Are there any other tests any one could think of that I need? I just had an MRI on my neck, yesterday due to it feeling "not right". I sure hope it is negative but at least I will know. Of course if it isn't, then Blue cross will pay, no problem I guess.

Does anyone know what is considered the absolutely state of the art treatment at this point? Taxol, taxtore, any possibility on the new one, ABRAXANE? Has anyone had this in combo with Herceptin, ideas on whether it would be a good choice or know where I can research it further-- I will try to get ahold of the company, too.

Anyway, my head is reeling. Going from saying no to chemo, because it was just A/C to this? Big change. Were there any clinical studies where just the two drugs were given and nothing else like A/C?

How many treatments of Taxol? We didn't discuss length of Herceptin--if figure an new doctor will be at the clinic before that decision will be made but I will try for one year.

What kind of drugs will I, or should I, receive in addition the Taxol/Herceptin. Any steriods? etc.? I do not want to gain weight. It took me three years to lose weight, I have the best wardrobe in my entire life and I don't want to grow out of it. Some of you can understand this feeling, others will think it silly. Silly or not, I don't want to gain weight and wouldn't mind losing 5 more pounds. ;-) Hair will probably thin or lose with Taxol? right? Any other side effects I should expect--I know the neropathy from Taxol.

What about supplements? Anyones recommended to take--or not to take?

Advice needed. Thanks everyone, and especially, Joe for this site!
Janet/FL