HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Search Today's Posts Mark Forums Read

Reply
 
Thread Tools Display Modes
Old 04-22-2009, 09:31 AM   #1
kristen8594
Senior Member
 
Join Date: Dec 2005
Posts: 27
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
__________________
Dx 2003 age 42
lumpectomy 4/03
Clean margins 5/03
1.6 cm her2+++ er/pr +
1/13 node positive
A/C and Taxol Dose dense/8 treatments/ 3 months rads
finished treatments 12/31/03
tamoxifen 5years
Starting late herceptin 5/09
Finished one year herceptin 5/10
Waiting to start Femara
kristen8594 is offline   Reply With Quote
Old 04-22-2009, 10:43 AM   #2
Jean
Senior Member
 
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006

Last edited by Jean; 04-22-2009 at 10:46 AM..
Jean is offline   Reply With Quote
Old 04-22-2009, 11:32 AM   #3
kristen8594
Senior Member
 
Join Date: Dec 2005
Posts: 27
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
__________________
Dx 2003 age 42
lumpectomy 4/03
Clean margins 5/03
1.6 cm her2+++ er/pr +
1/13 node positive
A/C and Taxol Dose dense/8 treatments/ 3 months rads
finished treatments 12/31/03
tamoxifen 5years
Starting late herceptin 5/09
Finished one year herceptin 5/10
Waiting to start Femara
kristen8594 is offline   Reply With Quote
Old 04-22-2009, 07:05 PM   #4
Becky
Senior Member
 
Becky's Avatar
 
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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.
__________________
Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"

Last edited by Becky; 04-22-2009 at 07:08 PM..
Becky is offline   Reply With Quote
Old 04-23-2009, 06:11 AM   #5
katsc49
Senior Member
 
Join Date: Jan 2007
Location: I live in south Carolins, Anderson.
Posts: 40
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
katsc49 is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 02:40 AM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter