Spoke with my Oncologist about Tykerb

Sherryg683 · 03-15-2007, 01:31 PM

I spoke to my Oncologist about putting me on Tykerb with Herceptin to prevent my mets from coming back...I am presently NED. He said he would be leaning towards saving Tykerb for when I needed it instead of putting me on it now. He also added that he really wasn't sure because there just wasn't any data on if it would indeed be beneficial being on both when there are is no active cancer, risking getting immune to it. He went on to say that he would do whatever I wanted, that he would put me on it an I would be sort of his trial case ..lol. I guess it's really just too early for them to have any concrete answers. I did bring up that it does cross the brain blood barrier and that I would really like to try and keep this cancer away rather than wait for it to return and fight it later. He said that since I have been in remission almost a year that undoubtly the Herceptin is working well for me..but indeed it was my choice. So now I'm more confused. I told him to go back and do ALOT of research on it and that I would see what the women on my board are going to do and I would get back to him with my decision next month. He always laughs at me about the women on my board. I always tell him "the women on the board say this, or the women on the board are doing that"..but hey..he does admit that I am one of his most informed patients. So now I wait to hear what the rest of you are going to do..I don't know, I'm still leaning towards getting on it..sherryg683

Esther · 03-15-2007, 02:58 PM

Tough call to make....I admit the decision for me is much easier to make, since I have had the brain lesion, which is considered a progression while on Herceptin.

So for me, I already know that I am at risk for brain lesions, and hope that the tykerb will prevent future lesions from developing.

I'm not sure what I would do if herceptin alone was keeping everything at bay.

Very hard decision to make, what are your instincts telling you to do?

Annemarie · 03-15-2007, 03:26 PM

Hi,
I have been NED for over 2 years and get Herceptin once every three weeks. I a have had a history of single lesion brain mets. My oncologist is going to switch me to Tykerb from Herceptin. I asked for both and he said he feels that would put be at a greater risk for cardiomyopathy. Has anyone heard this before? Is there any clinical data using them both together? My doctor didn't even want me on Herceptin over a year being that I was NED. I would love others feed back as well.
Annemarie

Val Pfeiffer · 03-15-2007, 04:39 PM

I am also doing Tykerb research right now (mostly on this site of course :-) -- I wasn't stage IV, but I was as close as it gets. I think I want to take Tykerb and drop Herceptin, which I'm on every three months now (for no other reason than there's not much data on post-treatment Herceptin, so we chose this).

Here's what I'm wondering: is Tykerb taken more often by itself or has it been shown to be more effective if it's combined with other drugs? Does it make a difference if it's taken post-treatment when someone is NED as opposed to as an active part of treatment?

MCS · 03-16-2007, 08:10 AM

I know how you feel Sherry. my onc laughs at me too when i mention the board. I figure that at minimum I'm letting him know that i am aware of what happens and that i'm looking for information so he's forced to look into it for me.

maria

Becky · 03-16-2007, 08:29 AM

Val (and others)

There is a clinical trial with Tykerb and Herceptin but there is absolutely no data yet.

There have been no studies using Tykerb alone but then again, there have been no trials using Herceptin alone either. In the metastatic setting comparing Herceptin/Xeloda versus the Tykerb/Xeloda - Herceptin/Xeloda outperformed Tykerb BUTTTT, Herceptin does nothing in regard to reducing and preventing recurrence of brain mets. Therefore, if one is Stage 4 and has had brain mets, there is good science behind the switch to Tykerb. If Herceptin is working and one is NED and has never had brain mets (and it were me), I might leave well enough alone and save the drug if I should need it later.

VirginiaGirl · 03-18-2007, 05:12 AM

I have been wondering about the use of Tykerb & Herceptin, also. I just completed my 6th Taxotere & Herceptin (1x/3weeks) and while I have tolerated it well and it has gotten me very close to NED I seem to be having more difficulty with it as I go. I didn't respond to Herceptin alone. My onc wants to discuss next treatment option as he isn't comfy w/ a med holiday yet. My initial thought was to save Tykerb for later, my husband says why wait? The fact that Tykerb is small molecule and can get in those microscopic cells easier does make me think I should try Tykerb next. Any other thoughts on this is appreciated.
Thanks!