Chemo options for brain mets after CyberKnife

Emmay · 12-15-2006, 05:53 PM

My sister(age 49) is being treated with CyberKnife every 3 months or so as new brain mets appear, usually 2-3 each time, and she's had 6 or more sessions now. She's already had Whole Brain Radiation(11/04) and two craniotomies(10/04 and 5/04). Herceptin has been keeping the rest of her body clear. She feels well and looks well, and her neuro-oncologist is suggesting she try 1 or more chemo agents to try to arrest the mets.

Temodar has been suggested (I know it's been successful for Pattyz for 18 months- yay Patty!!), and Sorafenib (just approved 3-4 months ago for renal cancer) possibly with the Temodar. Other options are Xeloda and/or Carboplatin. Anyone have any experience with any of these for Her2 bc brain mets - Temodar, Sorafenib, Xeloda, Carboplatin? Was it effective, and what were side effects? I know each woman can respond differently, but I'd love to know the experience of women in this group before meeting with her neuro-oncologist on Monday. Sincere thanks for your help.

pattyz · 12-16-2006, 10:29 AM

Emmay...

My 'success' has been from the COMBINATION of Xeloda and Temodar. I take two weeks of Xeloda as opposed to just 7 days of Temodar every 28. (thanks for the 'yea, patty'!!!)

I just read and saved from bcmets.org info on 'Sutent', a chemo being used in a trial for brain mets. Is a chemo for renal cancer. That's all I know, for now.

Gemzar is also small enough in molecular wgt to pass the bbb. I would personally consider it should it come to that...

I'm so glad to hear that your sisters onc is hanging tough, trying to come up with 'out of the box' treatments for her. That, to me, is a very good thing.

Hopeful hugs to you both,
pattyz

Emmay · 12-17-2006, 09:42 PM

Thanks so much, Pattyz. That whole long thread about "Sutent"(it sounds like Sorafenib is close to it) on bcmets.org was very interesting - I copied a lot of the info. And thank you also for sharing your chemo combo and dosing schedule -- every bit of information shared is a help. More power, prayers, and health to you!

pattyz · 12-18-2006, 07:58 AM

Emmay,

Sending big hugs to you both, big hopeful hugs...

and thank you, dear.

xoxoxopattyz

Emmay · 12-20-2006, 03:03 PM

We met with my sister's neuro-oncologist, who suggested a combination of Temodar/Sorafenib. The Sorafenib (also known as Nexavar, and "a sister compound" of Sutent) is an antiangiogenesis drug. I asked about the combo of Temodar/Xeloda, and she said that might be another option, but the neuro-oncologist is seeing some very early encouraging results with Sorafenib/Temodar combo. She said they are "radiation sensitizers", so she would like my sister to start the protocol(if she choses it) before her next CyberKnife treatment.

The most common side-efffect of Sorafenib seems to be a rash on the hands and/or feet, which subsides when treatment is interrupted, and sometimes doesn't return when treatment is started up again. Pattyz, what side effects have you experienced on the Temodar/Xeloda combo? Thank you very much.

pattyz · 12-21-2006, 08:54 AM

Emmay,

I am so impressed with your sister's doctor/s. So many just 'give up' and say there is nothing left to do...

My side effect, given my dosage and schedule, from the Xeloda/Temodar is just fatigue and feeling 'icky' for a few days. I do take Zofran to avoid nausea caused by the Temodar. The only time I forgot the Zofran, I was up in the wee hrs, throwing up... And 200mg of B-6 'just in case' for potential H/F syndrome.

My oncologist devised my dose and schedule for me. Can't remember if I told you the details, but think I did. Will do so again if you need that info.

I want to thank you for the information you have provided here, as well. I am saving this to give to my own onc.

Staying hopeful,
hugs to you both,
pattyz