Re: Gamma Knife A Success but more brain mets
 

Hi Courtney - I wish I had an answer for you too! Keep zapping those buggers. I wish I knew where to have Pam go. I don't understand why she is having so much edema and has to be on decadron when some like yourself have had several brain mets zapped and don't need to be on it at all. She is experiencing more side effects and they have had to increase the decadron dose back up to 8 mg/day <sigh> Just makes me feel so bad for her. MEanwhile I wish you all the best and hope someone can figure out why all these keep popping up for you. One thing I note is that Pam is having LINAC SRS and you are having Gamma Knife - wonder if that makes the difference in them popping up??? My best to you as always
Joyce

Re: Gamma Knife A Success but more brain mets
 

Hi Courtney,
I am actully the similar situation as yours. I keeping getting new tumors, even after WBR done last August. I had Gamma knife in Jan this year, zapped 3 tumors; Another Gamma knife last Thursday zapped 12 tumors (all at once).

I am currently on Xeloda & Tykerb; my onc will discuss with me about the drug plan in the following weeks. I am thinking to as for adding Herceptin and C into the regime, but not sure he would agree.

Would love to know your next plan/drug plan.

Love,
Grace

Re: Gamma Knife A Success but more brain mets
 

Thank you all SO SO much for the support and suggestions. I've actually seen Dr. Krop at Dana Farber for a consult in the past so I'm going to reach out to him for some advice. I'm setting up an appointment with Dr. Melisko at UCSF and she mentioned to me that they will be starting a Neratinib trial in the next 4-6 months. This HER2 targeted drug, as many of you know, is small and is thought to also cross the BBB like Tykerb. Another option I am considering that Kim (Radiant) mentioned is DCA - a treatment available in Canada. She gave me a site of a holistic doctor in Vancouver who is seeing some patient success on it. EllieF has also mentione Allostim which is available for compassionate use in Thailand. Decisions decisions. At least I know I have options - and that gives me hope. And without hope, there is nothing. I feel blessed, if not a bit overwhelmed, but I know I will continue to be okay. Thank you all for your love and support. I feel that I am not alone in this journey thanks to you all.

Re: Gamma Knife A Success but more brain mets
 

Love me a solutions oriented girl! Best of luck in pursuing the next option... I know you will find the best one for you! Keep us in the loop, as we know you will. Love, light and prayers to keep you safe along this path my friend!

Re: Gamma Knife A Success but more brain mets
 

Hi Courtney;
Dr. Krop mentioned the Neratinib trial should start in 4 -6 weeks. It might be sooner than you think. Told me that I had to have 1cm of tumor to track to qualify.
Kris....

Re: Gamma Knife A Success but more brain mets
 

Wow, you DO have options to consider. I was just reading about the promising early clinical trials for a cancer-fighting virus. They used it on 23 people who had "run out of options" -- lung, ovarian, colorectal, etc. But not breast cancer. It sounds like BC has a lot of treatments in the pipeline. May the beautiful garden that is your brain become NED. Stage IV CAN beome NED

Re: Gamma Knife A Success but more brain mets
 

Hi Courtney - sounds like you have lot of options to consider which is a good thing. Good luck in making a decision.