Need your help

Hello all--

I've just discovered your web-site and it is fantastic! I'm not sure of the etiquette here, or if I am even posting in the correct section. But you seem so nice, so I know you'll forgive me if I'm mucking about.

I'm due to start treatment soon, and am 6 weeks post-surgery. If you'd like a laugh, I'll tell you that since I'm so newly diagnosed (4/15/05) that all this time I thought being Her2+ was a good thing-- because of all the press on Herceptin. I now realize what a struggle it has been to have that diagnosis without the benefit of something like this wonder drug.

My question-- my Onc has recommended that I join a trial with 4 dose dense A/C followed by 4 dose dense Taxol & Herceptin, with Herceptin weekly for one year. I think this is a very good option, but I'd like to add some Carboplatin to my Taxol & Herceptin cocktail. She didn't discourage me from trying to find another trial which includes Carboplatin, but she wouldn't offer it to me outside of a trial.

Since I'm 6 weeks post-surgery, I'm getting anxious to start treatment. Do you think I should push to find an Onc who will give me the +Carboplatin treatment out of trial? I'm frustrated because while I like my Onc, she is reluctant to do anything that doesn't have strong research numbers behind it-- I guess I'm feeling that my Onc is more of a researcher than a professional who is willing to use their judgement. I mean, a year ago she probably wouldn't have done Herceptin out of trial.

Any thoughts, shared experiences, or directions to a NYC-based Onc who will treat out of trial (off-label?) is greatly appreciated.

If possible you might want to get a few 2nd opinions. My aunt went to New York Hospital and was quite satisfied--she is a 23+ yr survivor of b.c. that recurred on other side. However, her oncologist left to go out-of-state and she is not overly happy with new one. There is also Sloan-Kettering and am sure there may be some others as well as some in New Jersey.

Dear Saleboat,
Welcome to the sisterhood! It sounds like you have a lot on your hands; it would help to know what stage you are; do you know? Also, a second opinion is good and well worth the money; it helps with the feelings of uncertainty when you are in the midst of a crisis; keep us posted...
Love Kim from CT

I would also be intereted to know what your dx was and treatment to this point. Particularly why treatment has not yet been started.

My treatment was delayed for several weeks because of fluid after surgery. Oddly enough, this turned out to be a good thing for number of reasons--long story.

Sassy

[Patty H]

I don't know where you live, but my Dr. gave me carboplatin , taxotere and herceptin last year. As far as I know that wasn't a trial. I did pretty good on it. Patty H

I'm on Carboplatin/Taxol/Herceptin. I was under the impression that Carboplatin is reserved for late stage III and IV cancer mets shrinkage prior to surgery.

Perhaps you are an earlier stage, as you mentioned you had surgery and you are having adjuvent therapy, dose dense A/C, and all, so perhaps it is not indicated for adjuvent therapy?

Maybe you could find a trial? Maybe you really don't need it?

Best of luck,

Sharon

What is being offered to you is not "chemo lite". Its the biggest guns for early stage I and II bc. AND if you end up with the Herceptin youre adding the nukes. Chemo every 2 weeks in dose dense is proven more effective than every 3 weeks. the one good thing about HER2 is that it is greatly affected by chemo. Comparing cocktails can drive you crazy.

I was on dose dense 4AC + 4T without the benefit of Herceptin (my tumor was just shy a few mm to qualify for the trial). I hunted for an oncologist that would give me Herceptin for nearly 2 months. Did not find ONE that would give it off trial for my early stage cancer. Not enough data to support it. I almost wish that my tumor was a bit larger so I could get the Herceptin. In the end, all the drugs are entirely different on every body. All we have are statistics for encouragement. Joining a trial is a good thing. You get "the latest" with at least an extra benefit (in your case, hopefully Herceptin) that many of us do not qualify for.

I think that if we felt that taking radiation to our entire body would kill every single cancer cell that may be lurking about, we would probably do it. I understand your desire to get what you think is the most aggressive treatment possible. We all want that too. I finally got 4 opinions and 3 concurred with dose dense.

When in doubt, go to a breast specialty oncology center where there are "tumor boards" that review your histology. More heads are better than one. May the force be with you!

mts

Thanks for your responses. I am Stage IIIC-- I had a 2.5cm tumor, with 2 grossly positive nodes, and 12 micro-positive nodes (just invented that term, hopefully you'll know what I mean). My frustration is that I seem to be getting the same type of treatment as someone Stage I or II, but I'm a bit further along. Has anyone here dealt with that-- is that just another facet of this challenge that I need to deal with? I'm getting treated at Sloan-Kettering, so maybe I should just feel confident that I'm in good hands?

Many thanks for your help.

Hi Saleboat,


I have always heard that Sloan-Kettering is superb.

I thought Carboplatin was given in the metastatic setting... which you do not have...? Sounds like you want extra "chemo insurance" but also be careful of chemo overkill. Follow your instincts. Another opinion certainly could help you decide.

Just don't waste 2 months of running around hunting for a drug (like I did) that NO ONE was willing to provide (I saw 4 oncs). I can't help but wonder if those 2 months of no treatment will change my outcome -so move it sister!

Warmly,

mts

Thanks mts. I did start on Friday, and so far so good. Just learning to live with imperfect info and sense of insecurity. I've joined the club! Good luck to you. J

saleboat:

Did you get the cocktail you wanted? I hope it all goes well. I certainly would prefer to join a club under different circumstances. But it's nice to know I am not fighting this disease alone. This website has been wonderfully helpful too.

Hang in there!

Warmly,

mts