Discontinuing long term Herceptin

Marilyn · 12-08-2009, 04:01 PM

I saw my oncologist today and was thrown a bit of a loop when asked how I would feel about discontinuing Herceptin. I was diagnosed with Her-2 BC in Feb. of 2000 but did not qualify for the Herceptin study at that time. Bone metastasis was discovered in July of 2001 and I underwent 6 months of Taxotere along with Herceptin and Zometa. I continue the Herceptin and Zometa to this day and have been NED since January of 2002. I will have taken Herceptin for 8 years without any recurrences. WOW! I am not going to quit Herceptin without researching and I wonder if anyone else has discontinued long term Herceptin for no reason except that they are getting along extremely well. Thank you in advance for your feedback!!

Chelee · 12-08-2009, 05:50 PM

Marilyn, There are a few ladies here that were on herceptin for years that stopped taking it. Two of the women are getting ready to leave for the ASCO conference San Antonio. Or they may have left already...I'm not sure? So they might not see your message for a day or two. But one is Steph, and Christine. (The Her2 board's founder.)

I also think Andi was on Herceptin...or Vitamin H as she calls it for 9 to 10 yrs when she went off it? So far I believe they are all doing fine. I can only imagine how you felt when you onc hit you with that question. I admire the women here that have made that choice...for me personally...it would not be an easy one. If I was NED and my ECHO'S remained good...I am not sure I could bring myself to discontinue it? Very hard decision. But hang in there...I am sure these ladies will see your message and reply.

By the way...BIG CONGRATULATIONS on being 8 yrs out and NED.

That's so encouraging, and just plain old wonderful.

Chelee

Marilyn · 12-08-2009, 05:59 PM

Thank you Chelee! I will discuss this further with the oncologist in 3 months so I have plenty of time to wait for replies. I'm with you....not sure I want to change things when they are going well. I want to make a well informed decision.

Rich66 · 12-08-2009, 06:27 PM

These are the kinds of tough decisions everyone should have to make

jhandley · 12-09-2009, 01:46 AM

Hi marilyn
I have been off herceptin for 3 months after 4 years NED. I had one spot on the liver when I recurred in 2005 and went almost instantly into remission after tx. I will have a scan soon to see how I am going but looking good so far.
jackie (down under)

schoolteacher · 12-09-2009, 10:32 AM

Marily,

Thank you for posting this. I am anxious to see what responses you receive.

I have had Herceptin for two years in February. My oncologist also wants me to come off Herceptin. My last HER2 serum count was 13.4 in September. I do not know if the HER2 vaccine increased the rate or not. I will have scans on December 28th. I was also Stage IV from the beginning.

I am worried about coming off the Herceptin also.

Thanks for the post.

Amelia

StephN · 12-09-2009, 10:42 PM

Hi from San Antonio -
I have come off Herceptin a year ago after taking it for more than 7 years. My recent scan and labs show nothing of concern.

Tonight I had the pleasure of meeting a famous European doctor here who did a lot of the early work on Herceptin and is working on HER2 therapies still. I introduced myself and told him my status and that I had stopped the drug. He felt that in a case like mine where there has been no tumor activity in several years I am right to stop.

He said that if a patient has shown that kind of sensitivity, it will work just as well if I should need it again.
Anyway this is his experience with his long term
patients.

My case is hormone negative.

Good luck mulling over this decision. I have felt good so far and have not felt anxious about taking this step.

Jean · 12-09-2009, 11:02 PM

Marilyn,
What a wonderful post to read! I am so happy for you.
While at the same time I certainly understand your concerns.

I am glad to see that Steph replied while on duty at S.A.
and for her to share the input she received from the European dr. is what makes this site so fantastic.

Ameila - Your update is great to read also. I remember when you first came on the site. God Bless!

What an inspiring thread!
I wish that more of the sisters had this issue!
Best of luck to you.
Jean

jellybean · 12-10-2009, 12:02 AM

Congratulations, Marilyn! Your news is very encouraging to me. I wonder whether anyone is studying the Stage IV women who have stayed NED for so long on Herceptin alone to figure out what they have in common. Maybe you will hear something more on this at San Antonio, Steph.

Sherryg683 · 12-10-2009, 10:59 PM

I have been on Herceptin for 4 years now and I really don't plan on getting off of it anytime soon. I have been NED since April of 2006. My doctor has mentioned to me about getting off but he's leaving it up to me. I will probably consider it one day but it's still a few years off...sherryg683

sarah · 12-11-2009, 06:23 AM

Hello,
My oncologist has also asked me how I would feel stopping Herceptin. In the past it would have sent me into a panic but I am now considering it. However I have decided to stay on for one more year to get me through that 5 year point when my last recurrence happened. It's a big decision.
hugs and love sarah
Isn't it nice to be in on the decision and not just told.

Marilyn · 12-12-2009, 09:05 PM

Steph, I am ER PR Negative. How nice that you have spoken to experts about discontinuing Herceptin after years of positive outcome. I look to this board often for answers and come away with so much information. What a great resource this has been for me and I can't thank all of you enough for the posts.