How Long on Herceptin?

Leslie's sister · 12-15-2006, 10:30 AM

Hi there ladies. I haven't posted in a while but have been a regular lurker. My sister Leslie is doing great. She finished chemo the end of Oct and is now on Herceptin alone. She has asked me more than once how long other women are on Herceptin, esp you ladies that were diagnosed many years ago. So if you don't mind posting how long you have been on Herceptin, if you have stopped how long you were on it and how long it has been since you have taken it without any reoccurrence. Thanks again for a great site. You all have been in many, many prayers.

Bev · 12-15-2006, 10:03 PM

Hi Lisa,

I just finished 2 weeks ago, after a full year. I would guess Leslie will finish July 07. 1 year total is standard for early stage, while there are some who do less and some who do 2 years. Stage 4's can be on and off indefinitely. There will be another cancer conference in May, where length of Herceptin treatment should be discussed. BB

Linda · 12-15-2006, 10:33 PM

Hi. I'm so glad to hear that Leslie is doing well. I had a very similar dx (I posted when you first came on this board) and finished my one year of herceptin this August. At that time, I asked my doc if a second year might be in order. She (my doc) called her experts at Sloan and somewhere else (one had been the head of one of the main herceptin trials) and they told her that all indications were that a second year of herceptin had NOT proved beneficial for non metastatic bc, and so one year was still the protocal. Since that time, I've seen posts from other women -- all confirming the same opinion.
I hope that helps.
Best,
L

Heart Sutra · 12-15-2006, 10:37 PM

Hi Leslie's Sister (Lisa)

You're a good sister.

Simply wanted to say that. We hope Leslie does great, and you too.

---Kevin and Sue---

Chelee · 12-16-2006, 12:28 AM

Lisa, First of all its so nice that Leslie has such a awesome sister she can count on. Support and someone to lean on at at time like this is so important. I can see she has that in you.

Bev pretty much covered it rather well when it comes to herceptin. Most of us women get the one year of herceptin. Until they actually get some studies back that more is better...that will be the standard protocol. I personally would like to stay on herceptin a little longer then my year...but I know I won't be able too. But I am going to ask anyway.

I am so glad your sister is doing great and done with chemo. Herceptin will be a piece of cake to her now that she is done with the rough stuff. Wishing you and yours a very blessed holiday season and Happy New Year.

Chelee

Leslie's sister · 12-16-2006, 01:05 PM

Thanks for the responses. This is all so confusing but I’m getting it now. Stage IV’s can get it longer but earlier stages- 1 to 2 years max. I found an old thread that talks about this as well. She is so worried that once her security blanket, Herceptin is gone, then she is at risk again. I will put together all of this info for her. You all are such an incredible source of knowledge and inspiration. I appreciate everything that you have given Leslie and me. I pray that this disease is irradiated soon!

sassy · 12-16-2006, 07:10 PM

Lisa,

I continued my herceptin for 18 months, stopping just this month. As a stage III, my onc agreed to keep me on until we had some info on two year studies. Now that info is coming out that two years does not show a statistically significant benefit, we have stopped and I am perfectly comfortable with that decision. So for now, one year would be the standard for early stage.
________
ScarletFlower4u live

tousled1 · 12-16-2006, 07:15 PM

I am stage III and will be on Herceptin for one year. My oncologist did say that if I wanted to stay on it longer I could. My plan is to do the one year and if I'm still NED, I will stop the Herceptin at that time.

DEBBIE S · 12-19-2006, 01:02 PM

Lisa, Hi.... I have been on Hercp since 11/04 ... this is the date I started treatment ..... since I was dia stage 4 from the beginning and from my stats below .... I will know tomorrow if there are more changes from my last pet scan in Oct ... I have been on hercp only since Sept 06 ( this is when I took a break from chemo ) ..... Unfortunatly the last time I did hercp only I had a reoccurrence within 2 months .... will let you know once I have the results ... Tell your sister to insist on pet scans at least every 3 months ....

Debbie