Chemo options for brain mets after CyberKnife

[Emmay]

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]

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]

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]

Emmay,

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

and thank you, dear.

xoxoxopattyz

[Emmay]

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]

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

[heblaj01]

Emmay,
For possible future use get a look at Panzem article at
http://www.entremed.com/download/pre...b_FINALOUT.pdf

While the article is on gliomas, not brain mets from breast, the fact that Panzen (not yet approved) has antiangiogenesis properties & several other modes of action & is usable alone or in combination with Temodar makes it a drug with potential wide applications.
Clinical trials are mentioned (current & in 2007)

[Emmay]

I should clarify that the early encouraging results that my sister's neuro-oncologist is seeing is with patient(s?) melanoma metastasis in the brain, but since melanoma mets are notoriously difficult to treat, she is hopeful that the Temodar/Sorafenib combo may be helpful for breast cancer mets to the brain as well. As I learn more, I will post here.

Pattyz, thank you for the info on your physical tolerance on the Temodar/Xeloda combo, and the use of Zofran as well as B-6. I know my sister was on an anti-nausea med when she went through her first round of chemos, AC+T, in'04, and she did well with that.

Heblaj01, thank you for the link on Panzem -very interesting - the more new meds being tested in the pipeline the better, and the more hope for all of us.

Wishing everyone sustained good health and much love and peace for the holidays and the coming new year.

[Shahyan]

Hi,


I would also suggest Gemzar w carboplatin and Herception which is what my mother is on and she has shown a 50% response, with the Grace of God. I however, feel that her supplements i.e. Boswella Serrata has also been a great help.

Hope this helps

[Annemarie]

I have had brain mets 3 times. NED else where in the body. Herceptin seems to be doing its job there. I take Temodar monthly and Femara. I am looking forward to Tykerb. I am a seven year survivor.

[heblaj01]

To the info I reported in a previous post in this thread regarding Panzem, here are some dramatic pictures of the efficacy of the Panzem+Temodar combo in mice: see pages 12 & 13 at http://www.entremed.com/download/pdf...esentation.pdf

This combo is in phase 2 clinical trial at Duke University & is still enrolling patients.

[Joe]

Emmay,

I see you are in the Boston Area. You may wish to contact Dr. Eric Winer at Dana Farber who is currently doing research on various combinations of drugs with Tykerb to treat brain mets. He may offer you some valuable advice.

Regards
Joe

[Emmay]

Thanks for the heads up, Joe.

My sister's last MRI (one month post-cyberknife) looked quite good, but it's still early to tell whether the Sorafenib/Temodar combo is having a positive effect in addition to radiation rx. The next MRI should be more indicative. My sister is tolerating both agents well (no rash), after switching to Zofran to control the nausea from Temodar.

She was on an early Lapatinib (Tykerb) trial Feb-Mar '05, but it did not work as a single agent (she was off Herceptin from 1/05-3/05 for a trip and then the trial). She then had an additional craniotomy, and has been treated with focalized radiation as necessary since then, and continues with Herceptin every 3 weeks.

My sister's medical oncologist often collaborates with Dr. Winer in clinical trials (as with the early Lapatinib one). I have asked him(her oncologist) about combining Tykerb with Herceptin or other agent to see if there would be a synergistic benefit. We are waiting to see how she responds to the Sorafenib/Temodar rx(not a clinical trial but closely monitored by her neuro-oncologist), and if that is not exerting enough control, we'll look for other options. I'll be certain to post our experience here, and welcome and appreciate the shared experience and suggestions from others on this board.

Of the two of us, I'm the web-savvy sister, so I'm the active one on this site, but I want to let readers know that my sister has been remarkably resilient through all of her treatments since the beginning. She is a bit more easily fatigued (was very zippy before), not quite as agile as before (though still driving, walking the dog, working out at Curves, etc), and her short-term memory is a little weaker than mine (I'm 55 and it's not perfect for me either- maxed-out hard-drive;-) but her long-term memory is amazing and her sense of humor is as sharp as ever.