change of rx for brain mets

[Emmay]

Just wanted to let everyone know that my sister has changed medications; she had been on temodar/sorafenib since Feb. '07, and while it worked well for the 7 months she was on it, the side effects for her(severe loss of appetite and diarrhea) caused a swift and steady weight loss that was difficult to reverse. The MRI in early Sept. showed slight flaring around a few treated areas, and it was hard to determine if mets were growing or if it was necrosis.

So her breast cancer oncologist and neuro-oncologist decided to switch her to Tykerb(Lapatinib)/Xeloda, which she started on 9/24 -- so far so good. Her Oct.5th MRI showed no further enhancement from Sept.MRI.

I've seen a couple of posts that said that oncologists had said not to take Folic Acid(in many multivitamins) when on Tykerb/Xeloda -- why is that?

Thanks.
Emmay

[hutchibk]

Em - I have been on T/X since May and my 9mm brain mets have shrunk by half and my neck bone met is significantly less enhanced... so it can be very powerful against brain mets! Folic acid can significantly worsen the side effects of T/X, so steer clear of it. My nutritionist tells me not to take multivits or B complex either, because they both have enough folic acid to cause potential interaction.

[pattyz]

Emmay,
Just yesterday I was wondering about your sister and her treatments...

I'm on the Tykerb/Xeloda now, with the addition of Temodar. Scan in two weeks. My last scan showed slight progression in several of my brain mets. thus the 'new' tx's..

the number one and two side effects of the Tykerb are DIARRHEA and rash........ fyi!

I really hope your sis has the type of positive response as a few others have had....

best to you and your sister,
pattyz xoxo

[Emmay]

Thanks BHutch -- I'll tell my sister about the Folic Acid/Tykerb/Xeloda interaction.

PattyZ- I hope the Tykerb/Xeloda+Temodar works well for you too. My sister was on an early Lapatinib(Tykerb) trial for a short period, and she didn't recall a big problem with diarrhea, and only minor rash irritation.

We're all hoping the addition of the Xeloda to the Tykerb rx will make it all the more effective.

[Lolly]

Emmay, best wishes to your sister and you too.
<3 Lolly

[tousled1]

Emmay,

Wishing your sister success with the new treatment plan.

[Julie2]

Best wishes for your sister. Hope tykerb/xeloda is a wonder drug for brain mets.

Julie