Sisters with Mets...should I stop Herceptin?

mamacze · 01-22-2011, 06:42 PM

My fervent wish is that you ALL may have this conversation with your oncologist; but once again my oncologist has broached the idea of stopping all treatment.
I had mets in all 4 lobes of my lungs and liver in 2004; and have been NED since my first round of adjuvent therapy. My oncologist is asking me to consider stopping my Herceptin.
I have been on it for 7 years. I have body scans scheduled in Feb.
What is your experience? Please share and give me your thoughts. I value your opinions and would not consider continuing this walk without hearing from you.
Love Kim from CT

Jackie07 · 01-23-2011, 01:04 AM

Kim,

I would think it'll be OK for you to stop Herceptin now that you've had vaccine trial and been NED for over 5 years.

Enjoy your new freedom and don't look back!

Chelee · 01-23-2011, 04:38 AM

Hi Kim,
It's absolutely wonderful to hear your 7 yrs out and still NED. Such an encouraging post...especially for the newly dx that lurk and post here. One can never have enough hope.

As to your question, that would be a really hard decision for me personally. However that being said I know Christine, AndiBB, and StephN to name a few were all on Herceptin a long time and have been off it quite a while now and are all doing fantastic.

But recently we did have one Her2 sister "Jhandley" (Jackie) that was doing great after liver mets for 4 yrs or so and wanted to go off herceptin against her onc's advice. Six months out or so she recurred lungs, brain and spine mets. I can't think of who at the time but there is also one women here that said she has went off Herceptin 3 or 4 times now and each time recurred. But you never know if they would of recurred regardless of the Herceptin or not? It's impossible to say for sure?

However you are seven yrs out...and your onc feels good about it...but I know it's not easy. Hang in there and hopefully StephN and some others will reply. Their opinions will be very helpful to you I'm sure.

A 2nd opinion onc might help you decide too? Wishing you all the best..and may you and NED live happily ever after.

Chelee

norkdo · 09-28-2011, 02:34 PM

did jackie die?

10-02-2011, 05:51 PM

Thank you StephN for your reply. I was really looking forward to hear from you, and i am so happy for you and christine.
Mary L are you still ned too? I hope so. Do you all consider yourselves cured??
Also, did anyone hear anything from AndiBB? her story is really inspiring which is what we need in this thread. I hope you all continue to do very well and stay ned for many years to come.
Ema

Lauriesh · 01-23-2011, 05:37 AM

I am newly stage 4, and boy do I hope I have your dilemma someday!

What about extending time between doses? Maybe going every 6 weeks for a dose, then a year later, every 8 weeks.
Just a thought

Laurie

whatz · 01-23-2011, 08:51 AM

Hej Mamacze,
I echo Lauriesh's thought of hoping to have your dilemma someday :-). But just like Chelee I remember Jackie (JHandley) that recurred after going off Herceptin. I don't have any research to back anything up but because of Jackie I'd be reluctant to go off.

Becky · 01-23-2011, 09:19 AM

Dear Kim

AndiBB and StephN (as well as our founder, Christine) have all stopped Herceptin. Although Jackie Handley did stop - she was not on Herceptin for years - she was from Australia and even though NED, she was only 18 months out when stopped, not years and years.

It is an anxious decision to make and I would privately message Andi and Steph since they have walked this path. I am so happy you continue to do so well and havd go make this decision.

Miss you!

KDR · 01-23-2011, 10:06 AM

I, too, strive to be in your position. I am so new to this game, I probably can't offer any good sound advice, but pose questions instead--1) if you aren't having any side affects from the Herceptin, why would you stop, 2) does the pathology and/or aggressiveness of your former tumors matter, 3) if you had a recurrence, would it be harder to treat?
You and so many others continue to be what I hope to be. Thanks for paving the road, letting us know it CAN happen.

Mary L · 01-23-2011, 10:31 AM

Hi Kim, I was on Herceptin for almost 5 years. When my ejection fraction would go down my onc would stop the Herceptin. I had to stop it 3 times during the 5 years. I would get skin mets that would start at my mastectomy site and spread across my chest. Finally my onc said ," Dr. Slamon and I both feel you can stop Herceptin. If your cancer comes back we know the Herceptin works for you." I have been off it for 3 years this past Oct 2010 and I remain NED. It is scary because it was my security blanket, but I am doing fine. Best wishes and congratulations on your success. Mary L

Ceesun · 01-23-2011, 10:42 AM

Hey Kim, I wanted to respond and say how happy I am for you and think that Chelee and others have given great suggestions regarding your decision. (I know we recently communicated about my personal situation and wish I could follow your footsteps!!) I tend to be rather cautious about things, in general, so I would just suggest not to feel the least bit rushed in your decision making. Does your onc comment on the effectiveness of herceptin after a great length of time? Perhaps you are blessed with a very strong immune response as well. Whatever you decide, I wish you the best. Ceesun

ElaineM · 01-23-2011, 12:14 PM

I have three suggestions.
1. Ge a second opinion.
2. I think one of the other members suggested spreading out the Herceptin, so you still have some protection.
3. Asking for a lower dose of Herceptin and continue it on your regular schedule. That would give you some protection too.
Good luck and good health to you. Take care.

mamacze · 01-23-2011, 06:46 PM

Checking in with you all is better than putting on my favorite slippers; I truly feel like I just got a bucket full of love and advice from a room full of girlfriends.
I love Jackie's optimism ..and Chelee; I will followup on your suggestions.
Laurie, Ceesun, KDR and WhatZ; it is my fervent prayer that you all have my "dilemma".
Becky...how nice to see your face...and hear your thoughts! I had forgotten that StephN and Andi had stopped; I will PM them if they don't chime into this thread. I remember that Christine had stopped, but she is just such a miracle that it is hard to believe I could ever reach her level of recovery.
Mary L I am amazed that you have made it 3 years without recurrence! (PS Mary L, where in PA are you? Where do you get your treatments?)
Elaine, I will raise the options you mentioned with my onc. I think I will also call a doc at Sloan and Dr. Disis in Seattle where I got my Vaccine. As always you have all given me food for thought. Who says angels don't exist?!
Please keep the opinions coming, I am just so grateful for your advice.
Love Kim from CT

Bill · 01-23-2011, 07:05 PM

Hi Kim! I like what Elaine says, for what it's worth. What's your heart tell you? You are NED, so you do have time to evaluate and think. Weigh the pros and cons. Walk outside and find a good place to sit, a quiet place, close your eyes, take a deep breath, and think, "what's best for me? what should I do?" The answers will come. Kim, if you believe in a higher power, a quiet place is the best place to hear the answers.

Barbara H. · 01-23-2011, 07:24 PM

HI Kim,
I remember meeting you at the BCMETs conference at Dana Farber. I have been NED since starting on TDM-1 and am currently on Tykerb and Herceptin. I recently asked my oncologist if I could take a break. He felt that in my case I would probably recur again if I stopped, and that my current treatment would not work as well to bring me back where I currently stand. He did say that he would not have a problem with me taking a short break if I were to go on a trip. He spoke at the conference that you attended, was one of the first oncologists to enroll patients on the phase 1 trials for TDM-1 when it just was a number. He is involved with many trials and does research. You might consider consulting with him. If you are interested, send me a private response and I will forward you his name.
Best wishes with your decision.
Barbara H.

jellybean · 01-23-2011, 07:50 PM

Hi Kim,

Congratulations on having this great dilemma! When I met with Dr. Slamon, he indicated that when women have been NED on Herceptin alone for 7 years, he has tried "wrestling them off" the Herceptin. I asked him why he wanted them to stop the drug. He didn't seem to have a medical reason. He just wanted them to lead their lives without being tethered to the infusion center. He seems to believe that if the cancer has not returned for this amount of time, it is unlikely to do so.

He told me that if I were NED for another year and a half or two (it currently has been about 4 years), I should consider going off the Herceptin.

That said, if I were in your position, and I didn't have any side effects from the Herceptin, I don't know if I would have the guts to discontinue it.

Good luck with your decision!

JB

Delaney · 01-24-2011, 09:38 AM

I would definitely get another opinion. Elaine's suggestion of a smaller dose of herceptin sounds good. Congratulations on being NED for 7 years. I know I want to stay on herceptin forever ( and I hope forever is a long time)

mamacze · 01-25-2011, 08:45 PM

Bill, thank you for the gentle reminder to get quiet and listen to the still small voice. I will do that.
And Barbara; I do remember you! I am tempted to make a run up to Dana Farber for a second opinion; however I already have an appointment at Sloan and am waiting for feedback from Dr. Disis (Tumor Vaccine Group). Depending on what they say, I may or may not seek a third opinion.
JB, you gave me the nugget of information that I was really wondering about; what would Dr. Slamon do. Seven years is the magic number. That is huge. I will let you know what the other docs say.
Dear sisters; thank you from the bottom of my heart for your kind words and caring hearts. I will post again in a couple of weeks and let you know the outcome. God willing; you will all be facing a similar dilemma.
Love Kim from CT

StephN · 01-25-2011, 10:44 PM

Dear Kim -
Good to see you back here asking the tough question. I think you were pondering going off Herceptin a year or so ago, but decided against it at that time.

All is still well with you, I am SO happy to see.

I have been off Herceptin for over 2 years now. Just had scans and blood work 2 weeks ago and got a good report - all is boringly normal.

Please let us know what Dr. Disis says and how the appt at Sloan goes. I have met a couple of other women "like me" - meaning dx close to same time and recurred quickly, got to NED on Herceptin and finally went off. It seems like 7-8 years is getting to be a common number.

Cyberhugs to you.

Chelee · 01-26-2011, 01:12 AM

Kim,
Lots of good feedback here and I know the 2nd opinion will help. Elaine's idea of spreading out the Herceptin might be another good option till you decide what you want to do? I know Jhandley (Jackie) would spread her infusions out to 4 or 5 wks at a time due to the long drive for Vit H. For those ladies that might run across this thread at a later date, I just wanted to clear one thing up. Jhandley (Jackie) was on Herceptin for 4 yrs when she stopped it & had a recurrence...not just the 18 months that was mentioned. I checked her old posts. So Jackie did stay NED the 4 yrs she was on Herceptin...and recurred 7 months after stopping it. She hadn't hit that 5 yr mark some of our onc's talk about...but close to it.

However Steph, Andi and Christine had been on herceptin much longer then Jackie when they stopped Herceptin. They all passed that 5 yr mark and more. I know it can't be an easy decision..but I wish you luck with your 2nd opinion at Sloan, and Dr. Disis...at least you can take your time to decide...it helps when your not in a hurry. Here's to yrs of continued NED.

Chelee