Any Advice for friend with IBC and triple negative

[lisajones4]

Good morning. I was just looking for advice for a friend who was recently diagnosed with IBC and is ER/PR negative and HER 2 -. She is Stage IV since it is spread to her liver. The doctor's have decided not to do a double masectomy because it has already spread to liver. I will find out today what combination of drugs she is on. "They are hoping only to extend her life" and not giving her much hope. Any advice or places she should look for advice would be greatly appreciated.

Lisa

[Becky]

I would ask about (if chemo is going to be used) a taxane (Taxol, Taxotere or Abraxane) and perhaps add Avastin.

Even though Avastin isn't approved for breast cancer, the liver is full of blood and it would help prevent the tumors from forming a better blood supply. Also, it is well known that a taxane works very well in breast cancer that is not estrogen or progesterone positive.

Have faith. She is chemo naive and chemo may work very well for her. If it does, she could then get the primary (breast) taken care of.

[Lani]

be most sensitive to cisplatin (heard at two major bc conferences, one in July, one in October--very recent work and I don't recall if it has been published yet) and a subset are EGFR positive and thus treatable with Tarceva as well.

Has she been BRCA tested?

Since they may be testing for EGFR to see if Tarceva is indicated, perhaps they would do additional IHC testing to look for other targets as there are clinical trials for all sorts of new targeted therapies
PPAR inibitors, mTor inhibitors, HDAC inhibitors, etc.

Is she near a major cancer center?

[Ann in Boston]

You probably should also join the IBCsupport.org e-mail list. There are several hundred women with IBC on that list. Some are survivors of more than 10 years.

[Soccermom]

I was thinking the same thing as Lani...if she is BRCA+ she would be eligible for the PARP trial (similar to Hercep for trip neg) after primary treatment with another chemo. Also there is a website for triple neg. which might be helpful...
www.tnbcfoundation.org/tnbc/Home.asp
I am sorry I cant be more helpful,
Marcia