Tykerb vs Herceptin

[Mary Anne in TX]

Do I understand correctly that Tykerb can not be substituted for Herceptin, but instead is used when herceptin isn't any longer working? I know they act upon the tumor differently. One on the outside of the cell and one on the inside. I also know that Tykerb crosses the bbb. But would it make sense to use Tykerb if herceptin is working for you? thank you, ma

[grandma2]

i'm starting tykerb either today or tomorrow depending on how i feel. got very sick from xeloda. i was on herceptin for 15 months and around month 10 got mets. my understanding is that you get tykerb when herceptin fails or stops working. i've read about using both since they attack the her2 cells differently. i even asked my onc about continuing herceptin and adding tykerb. she said no it's only used if herceptin doesn't work. i think she's too rigid. i do know that there are studies being done right now using both, i think one at johns hopkins. makes sense to me to use both but at this point i would assume that insurances won't pay since it's not accepted by fda as yet. maybe someone will come along with more knowledge.

[Mary Anne in TX]

Thanks, "GM"!
It was suggested to me that I might want to switch to Tykerb because it's oral and I drive 3 hours to get to treatment. But I can't see the wisdom usless I got brain mets. I thought maybe there was something that I hadn't read yet. I do have tons of neck and upper shoulder pain, but I don't think that will stop even if I stop herceptin. I think the drugs plus radiation kicked in my family's history of arthritis.
I have played with the idea of stopping herceptin and substituting yearly scans and every three months tumor markers and other blood tests. But it's a hard decision. My insurance has doubled in the last year and they don't pay for some things. I'm just 1 1/2 year from 65, but I don't want to do something really dumb either. But who knows what that is. I appreciate the input. ma

[Sherryg683]

I got my oncologist to give me tykerb about a year ago to go along with the herceptin I was taking. I did not have any active cancer at the time but was interested in hitting whatever may be thinking about coming back in both directions..plus the brain thing was appealing to me. My oncologist recommended leaving the tykerb for later, if I needed it..but I am hard headed. After a week of using the tykerb, I took myself off it. The diahreah and acne just errupted and I couldn't eat anything without it coming out the other end. I decided why put my body through this unless I needed it. I do think you can take herceptin with tykerb as I was reading in an old issue of "Cure" that this may be the way to go. You just have to have an oncologist who will agree with it...sherryg683

[Rich66]

I am curious about combining herceptin and tykerb. Can't find anything on it. Was your unpleasant reaction typical?

[jones7676]

My oncologist switched me to Tykerb when he felt that the Herceptin wasn't working. However, there were not any tests done etc. to decide for sure. I chose to switch back to Herceptin after a little over a year as the side effects of the Tykerb were rough on me and the "tumor board" felt one was as likely to be as effective as the other/possibly neither may work for me.

[Mary Anne in TX]

Thanks everyone!

[Brenda_D]

I asked my Onc's nurse about Tykerb some time ago. She said it's for metastatic and it's something we'd save to use later if needed.
I'm guessing that insurance won't pay for it unless you're metastatic.
So far, Herceptin has worked very well for me.

[Mary Anne in TX]

Thanks again. I don't think my insurance would even consider it, but since it was suggested, I wanted to ask. I am approved til Dec. 08 to take herceptin and will decide then, I think. I'm hoping to learn more at the San Antonio conference in December. My insurance has upped my monthly cost 2 times lately from $200. and something to $456. Ugh! And they tacked on another $3000. to my $5000. deductible. Gotta really want the stuff!!!! Never thought I'd be excited to get to age 65 and medicare! It will resolve itself if I just chill and take it a day at a time and keep learning so I can decide. (What am I saying....they will probably decide for me)!
Have a super great day! My granddaughter and I are headed to safety in San Antonio! Don't want IKE to make the decision!!!
I'm so grateful for that little 9 year old! And for all of you!
Much love, ma

[Kim in DC]

Please read Esther's post regarding Tykerb and Herceptin. Studies show that the combination is more effective even after Herceptin has failed.

Kim

[Mary Anne in TX]

Thank you Kim!