Anyone with ILC triple negative?

Terry3N

Hi everyone and forgive me if I posted this before but it appears that this continual journey to figure out my best treatment options is never ending.  I was dxd with triple negative ILC and mets to bones in 2/07.  I was told I would be on chemo for life with the triple neg dx.  Then last year my oncologist at MD Anderson said my cancer 'didn't act like triple negative' as it doesn't appear to be fast growing and doesn't respond much to chemo.  He tried me on Arimidex for 3 months but scans get brighter and tumor markers went up so back to chemo again.  While I was reading online today I came across a site from the drug company that said 3 months is not enough time to see if an anti-hormonal is working!  It even said that sometimes the scans can flare up and tumor markers can go up before things calm down. 

I am just wondering if anyone else has this strange dx.  Most ILC is ER+.  I have been reading the research where they are giving Estradiol to those whose cancer becomes resistant to the AI's and am thinking that maybe it would make my cancer responsive to AI's.  Also there is a clinical trial at a University in Wisconsis where they are giving estradiol to triple negatives.  I live in Calif so the trial is out for me but someone is at least trying this.

 If you have ILC, especially stage IV, and you are triple negative I would really like to hear from you.

Terry