to: Lyn

[*_madubois63_*]

Hi Lyn - thanks for your words of encouragement. I am here to support anyone who needs it. If my story helps you, then I am very happy. I have been on Herceptin, Carboplaten and Taxatiere since October. Three weeks on and one week off. I also take Femara daily. This is the combo that has worked for me. Some oncs may feel taking everything at once may be too much, but I do have IBC (Inflammatory Breast Cancer) with mets so we had to be aggressive. I will continue this schedule for another month, and then we will change it up a little. I may get chemo just once a month and stick to the Herceptin on a weekly basis. I feel like I have stepped off the edge of the earth. Being here five years has surpassed everyones hopes. Now there really is no information to base treatments on. Its just a crap shoot. Remember IBC is a whole different beast unto itself. I just signed my medical records over to be included in a medical study the other day. I feel very positive about that. Maybe in the future others won't feel so out there on thier own. There will be information that has worked to base treatments on. As hard as it is, stay positive, stay busy and stay informed. Good luck and God bless...Maryann

[StephN]

I just wanted to say to MaryAnn, Sandy and other Inflammatory BC survivors that one of my first supporters at my clinic was an amazing Inflammatory survivor. Turned out that we had known each other when she was in the travel biz (also was a former actress in LA) some 10 years before we bumped into each in the cancer center elevator in 2001.

She had red hair and I did not know she was wearing a very good wig! And dressed in a red leather "swing-style" coat she had gotten when they had retired to Paris a few years before. She was diagnosed 6 months after taking up residence in France! With Inflamatory BC. Well, when she found out I was there for my weekly Adriamycin, she fixed it so we sat together in the infusion area and could talk. Our friendship rekindled under such ODD circumstances. She took me under her wing.

At that time she was 4 + years out and had some small mets that she was taking chemo for. Never complained of skin mets that I recall. She seemed to have to change chemos and go on and off, but the control was good - but never NED. (This is before all the new drugs.) She did not get Herceptin (and I know our med onc would have if called for) so not HER2 pos.
One day she came in to get her Neupogen shot and the nurse we both often had noticed that B.was slurring her words - NOT like an actress! Nurse reported to our doc's (B. and I had the came one) nurse and a brain MRI was scheduled. She had scattered mets and had to have whole brain radiation. She lost her driving privilege for 6 months.

Again B. bounced back and lived another nearly 2 years before her heart started acting up. She lost a lot of weight and was not doing too well for about 6 months - I was at the clinic when a call came to that nurse that B. was being trasported to the hospital. I went there to help her get through the red tape at emergency as her hubby was in London! This is the last time I saw her, but she was so grateful for my staying with her for hours until her other support got there. She was still able to make jokes and act like this was just another "episode" in a soap opera.

This fearless woman helped me get over my fear at the outset of my liver mets and I just want you all to know that my courage came from others' examples.

[*_Madubois63_*]

Steph - Thank you for sharing. It's funny how we become hero's to others when we may not really feel that way. Your friend sounds like a truly amazing person and am sorry for the loss. I think you are an amazing person and a very classy lady. Your advise, comfort and presence here is so helpful to us all. Thank you for being you. Maryann