Temodar
 

I start on the Temodar tonight along with the Tykerb/Herceptin.

Just wondering if anyone has taken this for brain mets and how you reacted and side effects

Thanks all

Re: Temodar
 

Dear Irene -

By the way - wishing you a good meeting with rad onc on Monday!

On this forum the main person who comes mind who used Temodor is Pattyz. She has not posted in a few months and this is worrisome as she had reported progression and some bad symptoms.

I think she has taken Temodor for several years along with a couple of other drugs. You can look up her posts for specifics.

There are some brain tumor online groups where you may find more information from people who took it for brain primaries. It has not so far been prescribed very often for metastatic BC that I have heard about.

I believe Brenda Hutchison researched it, so she may have some more info.

Re: Temodar
 

Irene, isn't there a site called brainmets.com or something that Christine and Joe told us about a while back! There might be something on there. ma

Re: Temodar
 

Here is a link to the brainmetsbc site.

Hope this is beneficial.

http://www.brainmetsbc.org/

Re: Temodar
 

Irene,
I've been thinking of you and am glad that you have determined a course of action has been determined.

As usual, our dear sisters on the site are a valuable source of information.

Continue to forge ahead and blaze a trail for us....wishing you ALL be best with this treatment and hopefully NO side effects. Get rid of those little brain buggers and be on your way.

All the best....Lori

Re: Temodar
 

Irene - I remember asking Patty Z. I will find what she PMed me a year ago and PM it to you...

(What I sent you is what she described to me last Aug/Sept 2008)

Re: Temodar
 

Irene - Just wanted to say I am sorry you couldn't continue with the t-dm1 trial and to hear the news on the brain met. I'm glad to see others have posted with info for temador. You are in my thoughts for good and effective treatment. Pam

Re: Temodar
 

Irene, How is the Temodar so far...i know its early, have you seen a radiation oncologist yet as far as the brain mets. You are in my thoughts and prayers Irene....you have been through so much, and still you are strong...I admire your tenacity...what a true role model you are for all of us!!!
Love and a big Hug!!!

Re: Temodar
 

Irene,

On the web, try brainmetsbc.org.

Joan