All stage 3ers

saleboat · 12-20-2006, 05:46 AM

I'm still really curious about this...I honestly never thought the Tykerb news applied to me...happy as I am to see the news. (If I had to have breast cancer at age 34, I sure picked the one to have...lots of new drugs and hopefully more to come.)

Has Tykerb ever been tested in the adjuvent setting? I thought that the big study that is starting is only for those who hadn't had Herceptin, but I'm not aware of any smaller studies. I don't think that my Onc would give me Tykerb-- in her mind, there is probably more unknown risk to taking Tykerb than from recurrance at this point. But wondering if anyone else has talked about this with their Onc.

I'm just afraid that Tykerb has some unknown side-effect, and since I hopefully have a long life ahead of me, I don't know if the risk is worth it. Say I have a 20% chance of recurrance at this point, is that enough to make Tykerb appropriate, given the unknown risk profile?

If anyone has talked about this with their Onc in detail, please share. I'm going to call my Onc, and want to be prepared-- she's a tough one.

Many thanks!

Jen

michele u · 12-20-2006, 09:24 AM

Jen,

This is my opinion only... being stage 3 myself and having 35 pos nodes, they told me my recurrence risk is 80% at 10yr. I will do anything and everything to stop this statistic. Yes, the Herceptin for stage 3 has really changed our outcomes, but how long? We don't have the data for 10 year yet. the 5 year is looking really good. You are hormone positve and can take something, i'm hormone neg. Tykerb is oral, and the side effects mostly are grade one. Meaning things like diarrhea and rash. They will probably only do trials for women that havent taken Herceptin, just because they want to get the market away from Herceptin. They stopped the stage 4 trials just like they did with Herceptin and are giving it everyone in the study they were doing. That means, it must be working. EVERYONE is trying to get their hands on this. It is supposed to fight against Her1 and Her2. Her1 is also EGFR. I know my EGFR is weakly positive. My Her2 FISH is 10. I can't take any hormone, that is why i'm so excited about Tykerb. It will end up being our hormone neg's Tamoxifen I think. To have a piece of mind, i will take the rash and diarrhea for a while.

sherri · 12-20-2006, 09:30 AM

Michele,

I agree with you, we should get this drug somehow. You are the leader, tell us what we can do to get it. As you know I'm from Canada, I'll talk to my Oncologist about it.

saleboat · 12-20-2006, 09:53 AM

Thanks, I had no idea the side-effects were so mild (relatively speaking). It is so tempting to let my guard down, but it is true, the Hercptin numbers look great, but it is still a short time period. I have it in my mind that if I can get to three years, I'm out of the danger zone--- comforting emotionally, but the science behind it is still shakey.

I'm going to talk to my Onc about it. I think I know what she's going to say, but maybe she'll surprise me.

Was this possibility-- using Tykerb in the adjuvent setting with high-risk early stage patients who have had Herceptin-- raised at all in San Antonio?

Jen

michele u · 12-20-2006, 06:05 PM

Jen,

I know what you are saying "if i can only get to 3 years" believe me, i hit 3 years and thought "only if i could get to 5". I don't think that never goes away!
My onc emailed me back, and he thinks what they were saying that if 75% stage 3 recure then they could cure 25%. I'm going to see him next and taking the book and showing it to him. I really don't think they will do early Tykerb studies with us Hereptin gals. Only because they come from 2 different drug companies, and Tykerb maker want the Herceptin market. that means they want to prove that Tykerb will work instead of Herceptin early. That's why our best bet is to beg for it off label. Being a oral med, i'm hoping most of our onc. will agree.

tousled1 · 12-21-2006, 11:44 AM

Michelle,

I'm with you! I had 14 positive nodes and my main worry if that some cancer cells could have travelled in the lymphatic fluid to other organs. I am going to talk to my oncologist about Tykerb in January when I see her. I know that at my last appointment I did bring up the subject of Tykerb and her response at that time was "I hope we don't come to the point when you need it."

Rozebud · 12-21-2006, 12:15 PM

Hey Michelle - Good to see you! Been off the boards for a while.

What about herceptin curing us? I keep hearing that. How many people have had early stage herceptin and how many have recurred?

If you get tykerb, let me know. I'd have to sign over the rights to my firstborn to get anything like that from my onc!