Confused and worried

Hi all,

I am both confused and worried about how things are progressing in my case. I was DX with IBC Stage III Triple Negative in March. This is a secondary cancer as I had just finished treatment for IDC Stage ii Triple Negative at the end of last year. I immediately went on Ixempra and Zeloda, but unfortunately, couldn't tolerate Zeloda. Stayed on Ixempra but still experienced spread of rash. Had first appointment with Dr. A at MDA who took me off of Ixempra because of the rash spread and put me on Taxol/Avastin. I had already had DD AC x 4 and DD Taxol x 4 last year. I've been on Taxol/Avastin for nearly two months but rash has still spread. However, I had a PET scan this week and the results came back that there is some improvement - glucose levels are down (I guess that means less cancer to uptake the glucose) and a couple of the lesions are better. The rash however has continued to spread. My local onc was for leaving me on Taxol/Avastin, but on consultation with Dr. A and examination of spread of rash decided to change to Gemzar/Carb. Dr. A basically said that even though PET shows improvement, you have to heed the spread of the rash too when treating. Also, they say that since i have had so much Taxol last year, that perhaps it isn't working so well now. So far, the only chemo I couldn't tolerate (Zeloda) was the one that seemed to work. Anyway, had my first Gemzar/Carb. yesterday. Today the rash seems red and irritated.

I am confused by this IBC thing. How can the scan show improvement while there is still spread of the rash. How serious is the rash? Is it an indication of cancer spread, if so, how come PET doesn't pick it up? I have watched my rash spread at least 1/3 if not more since being on chemo and am really worried at this stage that chemo isn't going to stop it. What happens then? I know they can't do surgery until this thing is under control, but what constitutes "under control". Can anyone help me to understand this thing more clearly?

Thanks in advance
Deborah