Stage IV NED and stopping Herceptin

kk1 · 11-06-2006, 07:12 AM

Hi Gang-
I am slowly creeping up on my 3rd year of being Stage IV NED. Saw my Onc the other day for my routine visit, every 12th week, and he suggested we might want to think about stopping herceptin. The plan would be to continue the usual CT chest/ab and Brain MRI every 6 months and quarterly labs of CTC, Her2 serum, and other standard markers and metabolic tests. I was rather surprised as he has always said I would be on Herceptin for life. The thought of not having to go to the CTU every 3 weeks would be wonderful but I am very nervous about stopping the herceptin....wish I had a crystal ball.

Have any of you who are Stage IV stopped herceptin and not had a reoccurence?

KK1

April 2004 Dx 1.5cm, 4 nodes, with mets to the liver. Her2,er/pr+
May 2004 weekly taxotere,herceptin, xeloda
October 2004 NED followed by Masectomy
since 2004: 3-week herceptin, aromasin, and zoladex

Sheila · 11-06-2006, 02:16 PM

KK

My Oncologist told me I would be on it until it quit working, I ahve been on it for 3 years ow.

Sherryg683 · 11-06-2006, 02:48 PM

I was told also, that I would be on it indefianately. My Oncoloist plans to add Tykerb to it once it's approved...sherryg683

JerseyGirl · 11-06-2006, 03:38 PM

My onc also told me I'd be on it indefinitely too; it's only been 4 months, but I'm planning on years and years!

Julie

jessica · 11-06-2006, 03:51 PM

The risk of stopping Herceptin for a few hours of freedom once every 3 weeks is definitely not one I'm willing to take! It's just too great a gamble.
I've been told "Herceptin FOREVER", at least until something better comes along.

dede10 · 11-06-2006, 09:53 PM

I've always been told forever, or until it stops working

Lolly · 11-06-2006, 10:24 PM

My onc and I talked about "someday" stopping H. if I remained NED for a long enough period of time that we both felt comfortable with that decision, but so far haven't been symptom free/chemo free for long enough. The closest I came was 2 & 1/2 years, but then recurred for the second time so that nixed it. Good Luck, keep us posted!

<3 Lolly

Roz · 11-08-2006, 02:29 AM

Hi, I understand how you feel. I have been NED since inception of Herceptin 21 months ago. Altho i am not ready to even think about going off it (note Lolly's re reoccurence after 30 months) I can understand how much you feel like you may want to take the plunge. However, perhaps at 5 years? What's the hurry? That's my thoughts anyway

pattyz · 11-08-2006, 08:15 AM

Hi kk1,

It sounds to me as though your onc is thinking of YOU. And your quality of life. I already like him!

My body has stayed NED (knock wood) for four years without treatment of ANY kind. The Navelbine/Herceptin worked great for my mediastinal nodal mets, spot on lung, spot on pelvis. And I stopped tx when scans showed all clear.

My onc said I could stay on Herceptin... but, since I had brain mets, too, I decided not to. My brain has been the site of multiple mets, but no more recurrance in the rest of my body.

I'm not deluded enough to think I won't EVER recur elsewhere, but I don't regret having one less drug/appt/infusion to hang around my neck every three weeks.

Currently I AM on Xeloda/Temodar for my brain mets... off and on for 15 months.

It is a personal decision. You need to do what you feel 'ok' with, since nothing comes with any guarentees when dealing with bc.

I was Stage IIIb, Inflammatory with two Invasive Ductal tumors, 6+nodes of 26 - Jan 2000. Mets dx'd July-Sept. 2002. Am 57 now.

Best wishes to you and on your decision,
pattyz

MJo · 11-09-2006, 06:43 AM

Is this revolutionary? Does the onc believe that all the cancer cells in your body have been destroyed and that you don't need herceptin any more? Do you feel like he's asking you to be a guinea pig? I was a guinea pig at Stage I -- taking the Oncotype DX test and the aggressive chemo, rads and Herceptin treatment, but I wasn't in danger like a stage IV. Whether or not you stop the Herceptin, I hope that it has eliminated all the BC cells from your body....forever.

pattyz · 11-09-2006, 08:56 AM

MJo,

If there were these kinds of 'guarentees', with 100% accuracy, wouldn't it be great???

I imagine those who recur after years on Herceptin wonder just what the heck went wrong.

Best to you,
pattyz

Christine · 11-09-2006, 10:03 AM

KIKI..... Sounds like a great plan to me!!

I have been taking Herceptin Since Sept. '99. ; and also was told I would be probably on it for life. I have had no major side effects from herceptin , until my recent Echo-cardiograms have been comming bach at 50% EF twice over the past year. Ironicly, one of the echo's last year was HIGH AT 65 TO 70. I do think that it is time to give my heart a rest. My Onc and I yesterday met to discuss a plan. We agreed that I am a NED patient for for over 6 years with no further relapses either in my chest or Brain. I also don't find most tumor markers helpful, except for CEA, and HER2 SERUM tests.
And so we opted to stay off herceptin for the next 3 months. I also think it is also wise to have a Cardiologist check out my cardiovascular system over the net few months to be sure my heart will rebound with no perminent damage.
I believe it is always better to investigate further as part of the process to get off herceptin, Since there has never been documentation on women , Stage 4, NED or whoever stopped herceptin and had a relapse. It a very interesting subject. I am thrilled you posted on this message board!!
I wull be having my Brain MRI in Dec. I will also have the liver and chest scanned at the same time.

All my warmest wishes go out for you. Keep with the program, sounds good.
Hugs,
Christine

jhandley · 11-10-2006, 04:03 AM

Hi KK
You could maybe have a break for 6-12 months and monitor by the her 2 serum blood test..and if th numbers start going up get back on the herceptin..apparently the numbers can go up about 9 months before mets are seen on scans.
Jackie

tousled1 · 11-10-2006, 06:29 AM

KK1,

I applaud your decision! I am planning to go off Herceptin at the end of my one year -- can't wait. There are no guarantees in life. Best of luck to you.

StephN · 11-13-2006, 10:17 PM

Hi Kim -
Well, you and I have had some parallel paths in this cancer fight. I had not thought much about taking a Herceptin break, but now I am.
I have had clear chest/abdo CT last month and having a bone scan tomorrow. My med onc had ordered a PET since I have not had one in 2 years. When I see her in Jan with all this fresh scan info, plus what has been extremely stable markers, I will broach the subject of a 3-month Herceptin break.

It seems this is new thinking and if our hearts are fine, the oncs do not bring it up. Mostly us Stage IV gals are lucky to still be breathing in their opinion. What prompted your doc to suggest the break?

Keep us posted on this plan, OK?