All stage 3ers

michele u · 12-18-2006, 09:07 PM

Ok, this is what caught me eye at San Antonio.There was a slide on the book we got, but they did not talk about it. They were talking about Tykerb.It said:

Stage 3 patients are possible CURABLE (>75% relapse)

I don't know what the 75% relapse means. but i emailed my oncologist to ask.I just saw the curable part and wanted to cry. I don't know why they didn't talk about it though. when my oncolgist emails me back i will let you all know. I don't think they will let us Herceptin use women in the early study. They want to prove that Tykerb is just as good as Herceptin in early use. Our best bet us to get it off label. I'm hoping medicare will pay for it. If our insurance companies don't want to pay for it, i wonder if there is a lawyer on line with us that could tell us if there is anything we could fight for. I really believe we all need to fight for this. What is everyone else's opinion?

RhondaH · 12-19-2006, 03:48 AM

I JUST bumped up my "Just for fun post" and KNOW there are attorneys listed. Please scan through it and maybe email someone in case their not on the board much? Take care and God bless.

Rhonda

tousled1 · 12-19-2006, 04:03 AM

A good place to start may be National Coalition for Cancer Survivorship (www.canceradvocacy.org. I belong to the Cancer Advocacy Now that shows you how to write to your senators and house members. They are currently working on lobbying to get the Comprehensive Cancer Care Legislation passed. It's a grassroots organization but could be a good place to start.

saleboat · 12-19-2006, 04:35 AM

Hi Michele,

I'm really glad to hear the good news about Tykerb, but have no desire to go on it myself. I'm just not convinced that it can do anything for me over and above the treatment that I've already had. But I also can use hormonal treatments, so that gives me a sense of 'doing something' to continue to fight the cancer. (Hopefully it is doing something worthwhile!)

Wondering if there were any updates on the big adjuvent Herceptin studies? The data in the NEJM study showed that relapse for Stage 3 patients leveled off after three years-- in other words, the patients looked 'cured' (fingers crossed) once they reached three years past randomization.

Jen

Lauriemn · 12-19-2006, 05:33 AM

I think some ins companies will cover tykerb. I was given herceptin off-label and my ins paid. I have Healthpartners and when I spoke with them about it they consider a drug experimental if the fda has not approved it for that use. So, Herceptin was approved for breast cancer, so they covered it. It did not matter that it was only approved for stage 4, as long as it was approved for breast cancer it was covered. They would also cover tykerb for me, even though I am only stage 2, under the same reasoning.

I am an attorney and my opinion is the fight is going to have to be an individual one against her insurance company. I would find out now how your ins co defines experimental, and see if there are any arguments to be made that tykerb does not fall into that category for you.

Laurie

Adriana Mangus · 12-19-2006, 09:56 AM

That will be something uh? Count me on; I will join the fight until we get all insurance companies to pay for it..Please keep us posted...

Margerie · 12-19-2006, 04:47 PM

Michelle,

Yes- do elaborate on the curable when you find out!!! I have been waiting for some INKLING of the word cure for us.

I am also going for Tykerb off-label in March. Onc and I haven't discussed insurance coverage, but I think it is much less $$ than Herceptin. Anyway, if I find out any insurance info (we have Blue Cross) I will pass along. I assumed once it is fda approved and your onc prescribes it for you, it will be covered. But who knows, not like I have ever been in this position before.

Kimberly Lewis · 12-19-2006, 08:20 PM

Does the >75% relapse mean that more than 3/4th of all stage 3's go on to stage 4? - and that on Tykerb they feel that we are curable. My impression from my first Oncologist was that I was pretty much expected to relapse, not much question about it. So I intend to do whatever I have to do to get Tykerb as soon as possible. Let me know if I can help in anyway Michele. Thanks for going to the conference!

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!

michele u · 12-21-2006, 07:53 PM

Rose,

good to hear from you again. you have been gone! I don't you will as hard of a time as you think with Tykerb, due to it is oral. Yes, we all hope we are cured, but if it comes back in distant place, then there goes that idea, and it's also too late to go back. I think Herceptin worked so well due to the earlier stages. I think the same with Tykerb. I'm wanted to take Tykerb mostly to prevent brain mets. It is supposed to be ableto cross the Blood brain barrier. I just don't want to be sorry later.