to patty z, anyone with WBR, using temodar

[rosie]

I am about to start WBR next week and read the abstract that was posted last week about temodar and xeloda. Even though I have already had xeloda for a year, I am going on temodar and xeloda while undergoing rads. Patty, can you tell me what to expect? Anyone with whole brain rads? I am scared of course.

They are going to spread it out over 5 weeks but I also have lung mets and if they start acting up, then I will have to go on chemo while getting whole brain. Doesn't sound like fun to me......

[pattyz]

Rosie,
I hope you received my email the other day! I have just now seen your post...dang it...

WBR spread over five weeks sounds both grueling and smart. But I hate that you must do it at ALL.

Have you had time to discuss getting Tykerb at some point, Rosie?

Anyone else have some input to Rosie's questions??

More hugs xoxox
pattyz

[Lisa]

I was on Taxol and WBR at the same time if I remember correctly. Which brings us to one of the WBR side effects. Memory. I frequently can relate with my father, who has Alzheimer's. I forget words, people, places, conversations, how to type, etc. Prior to WBR, I'd say I was a pretty sharp person. Now the idea of speaking in public (which I used to do) or doing a volunteer job makes me nervous. I never know when I'll be sooooooo tired, or when I'll lose words.


The radiation onc told me there'd be no side effects. Yeah, what a laugh, huh, ladies. My other major side effect is no full head of hair growing back. I look sort of like a monk with very short stubs and one big bald spot in back. I know that our late friend Mary ended up with the same hairstyle.

But there's nothing to fear re: the treatment. It's painless and fast. Just a pain having to go every day. For me that was 21 days.

Wishing you no fear and good health.

Love and light,

Lisa