her2+ and brain tumors

My oncologist told me that HER2+ cancer tends to go to the liver or brain. Also, Herceptin doesn't cross the blood-brain barrier, so it will not prevent HER2+ from moving to the brain. Sobering, isn't it. I'm not sure which chemo drugs work on brain tumors.

I had mets to my brain,they were going to do radiation,but my tiny tumor was close to spinal cord,and did spinal,found out it was in spinal fluid.I had an ommaya resevoir inserted under scalp,and had chemo through there.everything was working out good.Eventually after 6 tx.through resevoir,had to stop,I was also on steroids,legs got so weak,and I would get spells that would make me almost pass out.Fluid on brain.Had to put a shunt in,and no more chemo through resevoir.The good news legs got much stronger and i am doing very good tumors in brain shrunk.and in spinal fliud no trace.When they found it in my spinal fluid the Dr. told me to get things in order.Well guess what I feel better than I have in a long time and its 16 months after the brain and spinal fluid dx.My pet scans are good,and brain mri have been good.I thought I was a gonner,but I keep up a good attitude.My Drs. call me miraculous.As good as I feel I always am waiting for the bomb to hit when it is test time,which is coming up.

God Bless All of you.Annamarie

Usually a positive person.But everytime I would get bad news,not so positive.But as I go on and see how well I am doing,I keep positive.

Being Her2+++ brain mets are my biggest fear....what are you gonna do?

Hi there,  i am due to see a neurologist as i was getting very bad heads and my Doctor referred me on to   see him, i got a letter today to say, he has prioritised  as urgent, but cannot offer me an imediate appointment, but on urgent basis will get me in quickly as possible, whether that will be this side of christmas i don't know, i have meds to take if they get bad which is good and a preventive, i am not her+, so i guess i will just have to wait til my time comes up to be seen. thanks

My wife is HER2 and had brain mets.  She was on abraxane and herceptin.  They will not cross the blood brain barrier.  She received 15 days of whole brain radiation and we are about to go on a clinical trial at MD Anderson. The trial is a combination of Lapatinib and Sirolimus.  We have no idea what to expect.  if anyone has been on either of these two drugs, please reply.  The reason for the sirolimus is due to a metabolic profile done by MDA to show she has a specific gene mutation.  Here is the link for the trial.

http://www.clinicaltrials.gov/ct2/show/NCT01087983?term=sirolimus+and+lapatinib&rank=1