What worked for you?

jenrains

I am seeking advice from survivors of TN and/or IBC.  I was diagnosed in February of last year, stage IIIB IBC/IDC, BRAC -.  I went through 5 rounds of TAC every 3 weeks, when my doctor felt that the treatment was not working.  I did 1 round of Carbo/Gemzar, and then decided to seek a second opinion.  I traveled to Philadelphia to see Dr. Cristofanilli and was prescribed Xeloda and radiation.  I did 7 weeks of this, having radiation 2x a day.  After this, I was able to have a mastectomy with immediate TRAM flap reconstruction.  I stayed on Xeloda another six months.  Two months after coming off of Xeloda, I had a small skin met show up.  My PET scans showed activity in a lymph node near my lung and in one lymph node under each armpit.  These places of activity were so small, I technically couldn't even qualify for a trial.  I am now back on Xeloda for five weeks and will be scanned after that time.  If I have progression, I will have to choose a new treatment.  I have been offered Xeloda with Iexmpra, the Eribulin trial, and a few others. 

 My doctor did mention molecular testing, which although expensive, could discover a gene that the cancer is feeding off of.  If that could be found, drugs could be out there to target inhibition of that gene/protein. 

 I am hoping that others have been through similar circumstances and made it.  Thank you for reading.