So disappointed I can't be in neraritnib trial

michelekb

I have been talking with my oncologist and the research nurse for a couple of months about being in this study after I finished my herceptin. I finished my herceptin three weeks ago. I met with the research nurse this week and was ready to go. She called me today and said I was ineligible because my tissue left over from my mastectomy did not have invasive cancer. I originally had cancer in a lymph node. I did 5 months of chemotherapy before my mastectomy. At the time of my mastectomy I had a complete pathological response so there is no invasive cancer in my tissue specimens. She said that excluded me from the study. If that is the case it seems women who do neoadjuvant chemotherapy will mostly be excluded from the study.

Is there anyone who is in the neratinib trial and also did neoadjuvant chemotherapy? I really wanted to help future women and be a part of this study. I was willing to put up with any side effects. I am really bummed about it. 

annamari

Hi!  I was in the trials early before they changed the rules.. I also had good results from the chemo prior to surgery.  I originallly had a 11x6 cm tumor andat least 3 +ve nodes.. At surgery clear nodes and 1cm tumor.  I did well on the trials but confused over now being told I am node -ve.  It makes no sense but what are we to do.  Hopefully someone will clue into this as being untrue.  Wishing you all the best and someone will help to clear this out for you.

Kay_G

That is so silly and unfair!  I wonder if there is any way to appeal this some how.  It seems crazy.j

That being said it is great you responded so well to the chemo!  Congrats!  I have my last neoadjuvant chemo on July 25 and then surgery on Aug 17.  Here's hoping I have had a complete response too!  They saw multiple lymph nodes with cancer at MRI in March, which made me pretty nervous.