Herceptin question
 

Hello,
I was wondering if anybody could tell me about herceptin side effects. I am 5 years post chemo and finished my five years of tamoxifen. I cannot go on femara because I am not post menopausal. My onco gave me the choice of going on herceptin now, I was basically in shock because I had been asking for it a few years ago but it was not approved for post chemo patients. My insurance company gave the approval and now I guess its a go!!! Other than the possible heart complications are there any other side effects? I am an avid runner and weight trainer, will I still be able to continue these things? Has there been a lot of people that did have heart complications? and if so are they reversable? I understand that they monitor you quite frequently for this but now I am nervous.
Any info would be great. Thanks
Kristen

interesting....
 

Kristen,
Your post is very interesting.
First of all I am assuming that you were Stage 1
negative nodes.

I do believe (I could certainly be wrong here) that none of the members has had just herceptin this far out from chemo on our board. If so please respond.

In answer to your question of heart issue. What type of chemo did you receive? The A/C along with herceptin
was an issue. The new procedure is to not combine herceptin with A/C to avoid heart issues.

Of course with any drug there are always the chance of side effects. Are you in good health and do you have any heart health issues?

Most women are doing well on herceptin for years and yes you must and should track and monitor your heart with muga testing, which will show how your heart value is working.

You are currently NED since 05? The first three years are so important and you are NED? I myself was late in getting herceptin (off label about one yr. from dx.) but I never had chemo, so I had chemo/and/herceptin together.

Why is your dr. suggesting herceptin at this time?

Kind Regards,
Jean

Herceptin
 

Hi Jean,
Thank you for the fast response. In answer to your first question....I am not node negative, but node positive (i will fix my signature). I had A/C and taxol once every two weeks for 8 treatments, then radiation for three months. I am in general good health no heart issues that I know of (fingers crossed). I am very physically active. I did have a muga before starting chemo and I have an appt (they called today) for Friday for the first muga before herceptin. I have an appt with onco to start May 4th.
I think the reason is because I just missed getting it when it first came and I was waiting for a clinical trial for late herceptin but none came out. So....my onco decided to try to get some of her patience on it now and it seems to be working. Maybe this will be a trend we are now going to see.
Her further thinking is that I cannot go on femara because of my menopausal status (still possible surgery for ovaries removed) my status has been flip flopping around since I was on chemo. She does not want to leave me on nothing and have me show up in a year from now with mets, so she is attacking it more aggresively now hopefully before anything happens. Does this make sense? I will also be curious if anybody thinks this could be something we may be seeing more of now. Frankly I was very suprised that my insurance company authorized it without even having to get a pre authorization.
Part of me feels like why mess with my NED status but the other part says....it was offered so why would I refuse something like this...i have two 13 year girls that I would like to be here for a very long time.
Thanks so much....any more info???
Kristen

There will not be very many if any people here getting Herceptin 5+ years out but I will sight the HERA study to help you ponder your next steps.

The HERA study was the European version of the Herceptin adjuvant trial. In that study (which is still ongoing and everybody is awaiting the 2 yrs of Herceptin results) gave Herceptin after chemo and in some cases, after radiation too. Women entering the trial had to have positive nodes or a tumor that was larger than 1cm. Most women started Herceptin 1-6 months post chemo. As usual, in the trial, a third of the women got Herceptin for one year, a third got Herceptin for 2 yrs and the last third did not get Herceptin.

In 2005 the great results of getting Herceptin one year (along with 2 other studies that combined Herceptin with chemo) made getting a year of Herceptin Standard of care. It also ALLOWED the women who did not get Herceptin the opportunity to "cross over" and receive Herceptin regardless of how far out they were. The HERA trial allowed cross over. So, women who were in the trial in 2000 and onwards were allowed Herceptin in 2005 if they chose to. About 20% of this women did and they made a new study arm called the "observation group" - obviously made up of women who got late Herceptin (some of them very late indeed). And the results so far - the women getting the late Herceptin had statistically less recurrences than the women who did not receive Herceptin. So late Herceptin works. There is not as much time to compare these women with the women who got Herceptin from the get go but so far, late Herceptin does work.

So, for you to ponder - it does work but also, there are less recurrences as you get further out.

Also, most cardiac problems with Herceptin are reversible.

Herceptin Side Effects
 

Hi, Kristen,
I have been on Herceptin for 3 years now and it is my back bone. I have muga tests every 6 months and mine have been good so far...
It does cause my legs and feet to hurt, but that is all.
I have been on it with taxotere, taxol now, and navelbine, but the chemos have given me more side effects than the Herceptin.
Hope this drug works out for you, it is a good one.
I am node positive.
Have a great weekend,
hugs,
kathy