2nd opinion says no to staying on herceptin.

Chelee · 06-15-2007, 07:23 PM

I *finally* got my 2nd opinion to see about staying on herceptin to complete two years. My current onc delayed my 2nd opinion and same as defeated my purpose by putting off my visit by 3 months! But I guess it makes no difference now since my 2nd opinion seems to agree. She mentioned the HERA & FinHer trials and we all know about those. So since no one really knows if one or two yrs is better....or even less...the 2nd opinion onc suggest I pull my port and move on.

Since I could not have radiation I would of still felt better staying on herceptin to finish out the 2nd year. My last two ECHO'S were 69% and 70%. Who knows what's best at this point...but I guess I won't be continuing. I'm a bit disappointed even if it turns out that they are right.

Chelee

Bev · 06-15-2007, 09:03 PM

Hi Chelee,

Get one more opinion so you can feel comfortable. Latest study today says some HER2- ladies can benefit from Herceptin while some HER 2 positive might not. Means some other nasty fine point is coming into play. To me this means continuing H might not be crucial, but we really don't know.

If it were me, if a 3rd opinion wanted to use H, I would happily comply, but I could accept 1 year as enough. Your echos are good.

Bottom line, we don't know. So it's hard to get people to act on the unknown. Good luck, Bev

Chelee · 06-16-2007, 01:41 AM

Bev, That might be a good idea. I am not sure my insurance company will cover another opinion on this, but I would sure be willing to pay for it myself. When reading your post you mentioned some Her2- women could benefit verse's positive. I am Her2/neu 3+++. Super positive. So maybe it wouldn't help in my case? I sure wish the results of the HERA trials would of been released this year. I was really was hoping to do anything to increase my odds some. I still can't help but wonder about many of these women on the boards that have been on herceptin for years and saying NED? Sure makes me wonder? Thanks so much for your reply Bev.

Chelee

pattyz · 06-16-2007, 08:49 AM

Chelee,

I was on Herceptin (w/Navelbine) for mets. Had just four months worth to get to NED in body. I then stopped tx's for body altogether. That was early Jan of '03. Tho' I have had 3 occurances of brain mets, my body remains NED, nearly 4 1/2 yrs now.

So, that is MY story. Herceptin for four months total. Give yourself a break!

Best to you,
pattyz

Mary Anne in TX · 06-16-2007, 09:55 AM

Hi Chelee!
I've been on herceptin since May of '06 and am continuing for I don't know how long. You can see below what the other stuff was that I took along with herceptin. I am not real knowledgeable about any of this but, about 2 months ago, when I was through with the radiation for a bit, I began to notice that my body was changing. The body fat (including breast size - one left) was decreasing rather quickly. That is the thing that puzzled me about 7 years before I was diagnosed - breast size increased and hair became a bit wavy. My hair is curly from the chemo, but it seems to me that with the herceptin alone, my body is going back to "normal". Everything inside of me believes that the herceptin is allowing my body to return to what it needs to be to take care of me. It may be totally whacky, I admit, but I am so grateful that my onc has not stopped the herceptin yet. He won't say how long he will keep me on, but every month feels right for now. I think we're doing a watch and see thing. Good luck on getting the results you want and need. We are in such an unknown territory, but, like you, I'd like to keep it up a little longer. I also think the gals who stay on seem to benefit! ma

Chelee · 06-16-2007, 01:15 PM

Pattyz, Yours is a very encouraging post. Other then the brain mets you've had to deal with...you have done GREAT! So only 4 months of herceptin...that is fantastic. That's what's so up in the air about herceptin...I've seen so many do good that's stayed on it...and some like you that has had smaller amounts & have done just as well. I realize they just don't have all the answers yet on herceptin, but I am glad I did get at least the year of it.

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Mary Anne, Ok...give me the name and address of YOUR onc...maybe he will ok my herceptin. lol I really don't know why my onc should care if I stay on herceptin IF my insurance company will cover it? (And they will.) I am the one willing to take the risk of continuing...so what's it to them? Other then the expense. Since I am in a HMO...I always feel like what it really comes down to is them *saving* money at every turn. (Even if that is not the case.)
Mary Anne, what you said does *not* sound whacky at all. I sure wish I had an onc that would allow me to stay on it. As someone else once mentioned...I feel like why would you take someone off there blood pressure meds or diabetic meds...seems the same with herceptin even if its not? I hope they come up with some answers on this soon.

Thanks to both of you for replying.

Chelee

vickie h · 06-17-2007, 12:32 PM

Chelee, I would accept those 2 opinions. I was on Herceptin for over three years and it quit working about a year before I finally stopped. There is researxh that says Herceptin can and does quit working at some point. I am now on Tykerb (which targets the inside of the cell vs the outside(herceptin) and I am doing great. Ask them about Tykerb, if you even need it. It sounds like you are doing great and I am so happy for that. Love, Vickie

Chelee · 06-20-2007, 01:06 PM

Vickie, I was thinking about getting a 3rd opinion on this...but the *delay* they've caused me by putting off my 2nd opinion kind of defeats the whole purpose of me staying on herceptin. I wanted to continue herceptin *without* any inturruptions till my two yr mark and then stop it. But they pulled me off of it at one year mark...then delayed my 2nd opinion for almost 3 months! So there went 3 months that I could of been on it down the toilet so to speak. But I can't worry about what could of been...just keep moving forward. I just feel like I should still be doing something...hope that feeling goes away soon.

Thanks so much for your reply Vickie. I will keep you in my prayers that Tykerb kicks butt and works wonders for you. I'm so glad to hear your doing good on Tykerb.

May you be dancing with NED soon.

Chelee

vickie h · 06-20-2007, 02:01 PM

Thanks for your post Chelee. Please don't worry about those three months and stay positive. Again, I would hope you are a candidate for Tykerb. It has worked wonders for me and few side effects ( I'm on a reduced dose). I pray for you everyday and am soooo happy that you are with a new Onc now. Much love and compassion, Vickie

Rozebud · 07-08-2007, 08:05 AM

One more opinion I'll throw out. I went through the same concern over 2 years ago when I went off herceptin. When will HERA release results? Frustrating we don't have any more information than we do know. However, I know LOTS of women who were dx'd in 2003 and 2004 that were stage IIIA or later, and only had herceptin for a year, and most of them are doing fine now (myself included). I know your struggle....but at the same time the finnish study showed a few months of herceptin seems to have the same benefit as a year.

Chelee · 07-08-2007, 11:51 PM

Rose, The HERA results were pushed back. I've heard it will either be 2008 or 2009? I am hoping for much sooner. Its a shame after all this time they really don't know what's better...more or less? That being said, I am still glad I was able to get and complete a full yr of herceptin.
Its so hard to say what's better in the long run at this point. With the amount of time I have on the boards...I've seen so many women that have been on herceptin non-stop for yrs & doing GREAT! But then again...like you said Rose...there is also lots of women that are doing great that only had a yr of herceptin...and in some cases less due to low ECHO's or MUGA's. So who is to say? I can't wait till they release the results from the HERA. It won't be too soon for me.

Thanks so much for your post. I am thrilled to hear your doing fine too. I am so thankful for women like you that stick around to let us know how well your doing.

Chelee