when tykerb/xeloda don't work, what next?

[sarah]

Our friend with IBC, ER- Pr-, HER2+++ is not doing well on Avastin and Navelbine. She tried Tykerb and xeloda and failed. her oncologist said no Herceptin with Avastin because of heart problems. I think she should always be on herceptin but....... her blood pressure was very high, now low and her white blood cells are low - she gets neulesta.
Sheila I see you are on Avastin and Herceptin with good results - what is your heart test level and what is your ER? Was your doctor worried about your heart?
Jean _ are you ER- or ER+?
we are very worried for our friend and her husband died 2 years ago in an accident so it's tough for her. Her daughter is about 10,000 miles away and her mother is elderly.
We both live in France and generally the medical treatment is fantastic.
thanks
sarah

[Becky]

Herceptin and Avastin cause differing possible problems. Avastin can cause high blood pressure (this is probably why your friend had high bp and now it is low (since she is off Avastin)). Avastin can also cause nose bleeds. Herceptin, as most of us know, can decrease the ejection factor and cause congestive heart failure. Getting both of these at one time can cause an enlarged heart so I can see her onc's reluctance since she got the high blood pressure.

Could he give Herceptin with Tykerb perhaps? Did she have carboplatin (perhaps with a different taxane and Herceptin)?

Gemzar with Herceptin? I am just thinking out loud for you.

[sarah]

thank you Becky.
I think they're very strict here about what they can give with tykerb - the doctor could go to jail if he doesn't follow strict rules.
She is now going to have a second opinion (but not until late january) with my oncologist who is always extremely up to date and I believe will do whatever is necessary for his patients. He got me on things that a less famous doctor couldn't but no one can argue with his reputation. plus he's a fuzzy, kind doctor, so I hope he will have something to say. unfortunately he works in the same cancer clinic as her doctor so may want to tread delicately but in person she should be able to overcome that.
we are worried. we know how serious inflammatory bc is.
her courage and inner strength are amazing.
As you mentioned: she had nose bleeds - finger bleeding - quite strongly. it's interesting also that she seems to get worst when:
she's off herceptin
in the winter
last december we were frantic for her and got her into a trial in LA for tykerb but then it came to France so she didn't have to travel there. now this year.
I really appreciate your suggestions. This site is a so wonderful. I wouldn't know where to turn.
love and hugs
sarah