Tykerb while in remission?

[Sherryg683]

Do you know if you can get on Tykerb while in remission. I am presently on Herceptin and would love to get on Tykerb also. From what I've been reading this is suppose to be a very promising combination. I really would like to get on the Tykerb to protect against brain mets also. Do I have to wait till I go out of remission to try this...I sure hope not. I am seeing my Oncologist on Thursday and would like some opinions. I didn't tolerate Xeloda very well, expect if I could take a very, very small dosage...sherryg683

[doh2pa]

Hi Sherry,

I just saw my oncologist last week and asked him the same thing. He said currently the criteria are very restrictive but felt they would be loosening very shortly. He did not, however, think they would be loose enough to allow someone like you or I, who are in remission, to get the drug. Frustrating, why do we have to wait for something bad to happen??

Donna

[heblaj01]

I think one of the possible reasons for oncs to be reluctant to give an additional treatment(such as Tykerb) to someone who is NED from an other drug (such as Herceptin) is first it won't provide any measurable better outcome but it can introduce either new side effects that worsen QOL or even more importantly it may cause early resistance which would make the new treatment not usable when you realy need it if & when the remission ends.
An other reason is the lack of approval of the combo regimen. Doctors are allowed to use approved drugs off label as they wish but they fear lawsuits & loosing their licence to practice if their prescription leads to an unexpected fiasco for the patient.

This said, it is certainly still frustrating since other risks may not be taken care of (such as brain mets) until new symptoms appear.