[IRENE FROM TAMPA]

Hi Carolyn

I just read your post and wanted to tell you what happened to me. I live in Tampa, Fl. and noticed you are close by. I have been battling breast cancer since 1996 and I really think I have tried every chemo out there. I have also had a stem cell transplant in 1999 and liver abalation and liver resection.

I was on the Tykerb/Herceptin trial a few years ago and that gave me 1 year of stability, but never really tumor free. I heard about the Herceptin/DM1 trial and started that in June/2008 and they can not seem to find any tumors at all (from a diagnosis of 16 tumors in June/08)
I am afraid to even say it out loud for fear of jinxing myself.

My oncologist in Tampa is keeping on top of all of the trials. I go to Florida Cancer Services in Tampa (formerly Bay Area Oncology)

My trial co-ordinator had a difficult time getting me into the trial - first because I had been so heavily medicated, then it was because I had a stem transplant in 1999. She fought very hard on my behalf and finally got me in.

I have now finished my 17th treatment and am going into what they call a continuance and it will be the same drugs as long as my counts stay stable and I do not have any progression. I have been having some low counts to my plateletts and my Bilirubin has risen and they are keeping an eye on that. I can't seem to keep my potassium levels stable but take pills for that. Other then that it is a very easy regimen to take.

Where do you live in Florida? It might be far for you but if you want I can give you my doctors information and maybe you can give a try. As I understand, they might be having a new trial coming to them soon. I do not know the numbers on that one yet but am keeping tucked in my bag of tricks against this horrific disease.

I wish you the best of luck. You can post or send to my email address.