Brain Mets

[hannah]

Hi would like any info on treatment for brain mets besides WBR and Gamma Knife.
Has anybody recieved Temodar/Thalidomide and what results did they get would be very grateful.
Hannah

[Celina]

Hannah,

Pattyz has recently started Temodar and Xeloda with promising results. I hope she will respond to your post. Have you had WBR yet? There is a clinical trial in Boston..Lapitinib, which has also shown promise for many.

Celina

I have had reoccuring brain mets for over 4 years. I have taken Temodar in the past. Temodar works well in primary brain tumors and has modest effects for brain mets. I did get a reoccurance while on Temodar but after several years off of it I will continue it in January. My insurance will cover 100%. I was paying about $300 and that is with my insurance paying 90% per month! I can't put a put a dollar value on my life. I guess you would say I am priceless! LOL

[jojo]

Does Temodar come in oral pill form?

Temodar is oral chemotherapy.

[lu ann]

I agree with you Annemarie, You are priceless!

Hannah... What Annemarie said, plus: I am on Temodar/Xeloda now. Have had pretty good response of nearly 50% after two rounds of my scheduled doses.

I posted here recently about the possible response of brain mets to different chemo combos.

The biggest survival factors are: no other systemic mets/or atleast controlled/inactive. Longer length of dx of brain mets from original dx. ie. two yrs is better than one yr post original dx. And fewer/smaller/less symptomatic brain mets.

I have the first two factors going for me. Brain mets dx was three yrs, one month ago. Have had 16 treated with five seperate focalized treatments over the course of 21 months. Progression with symptoms this Aug. I have not had WBR, refusing it throughout. Any more rads now come with high risk of immediate brain damage.

So........ that is why I am on the chemo combo. And happy, SO happy to have had a response.

You give little reason for your question, otherwise we might be able to focus our replys better to you. Every treatment protocal for brain mets must be tailored to the individual. That is the most up to date good medical opinion.

pattyz

[hannah]

Thanks for info I am asking on behalf of sister-
Diagnosed 2000 had Mastectomy +6 months chemo then Tamoxifen.
2003 c/o headaches diagnosed skull and lung mets commenced 4 months chemo ER+++ commenced Herceptin then diagnosed in 2004 with Brain mets had WBR and 1 session of Gamma Knife 6 months later. In March 05 Brain Mets growin so commenced Taxotere 4 months . The chemo finished 6 weeks ago suddenly loss of balance nausea and vomiting diagnosis 2 brain mets on base of brain grown slightly affecting balance will see Neuro Onc next week ? what next. Sister 39 with 2 small children very worrying thanks for help
hannah

hannah, have they suggested another Gamma Knife or similar focalized radiation? Or were these tumors already treated with focalized rads? I think if these have not been directly targeted before, that it would be possible to do so now.

pattyz

[hannah]

Thanks Patty thats what we are hoping for I will let you know how she gets on.
Hannah

Hannah, OK then!! We'll be here, hoping for good news for your sis.
hugs,
pattyz