Sisters with Mets...should I stop Herceptin?
 

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

Re: Sisters with Mets...should I stop Herceptin?
 

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!

Re: Sisters with Mets...should I stop Herceptin?
 

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

Re: Sisters with Mets...should I stop Herceptin?
 

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

Re: Sisters with Mets...should I stop Herceptin?
 

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.

Re: Sisters with Mets...should I stop Herceptin?
 

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!

Re: Sisters with Mets...should I stop Herceptin?
 

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.

Re: Sisters with Mets...should I stop Herceptin?
 

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

Re: Sisters with Mets...should I stop Herceptin?
 

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

Re: Sisters with Mets...should I stop Herceptin?
 

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.

Re: Sisters with Mets...should I stop Herceptin?
 

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

Re: Sisters with Mets...should I stop Herceptin?
 

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.

Re: Sisters with Mets...should I stop Herceptin?
 

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.

Re: Sisters with Mets...should I stop Herceptin?
 

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

Re: Sisters with Mets...should I stop Herceptin?
 

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)

Re: Sisters with Mets...should I stop Herceptin?
 

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

Re: Sisters with Mets...should I stop Herceptin?
 

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.

Re: Sisters with Mets...should I stop Herceptin?
 

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

Re: Sisters with Mets...should I stop Herceptin?
 

StephN! How joyful to hear you are still NED! Angels sing! Life is good! NOTHING beats a boring normal scan result!
I think you are right about the 7/8 years NED mark; but as you say, stay tuned; I will post what the Sloan folk say.
And Chelee thank you for the clarification on Jackie. It helps to know the facts.
I will post after seeing Dr. at Sloan.
Love Kim from CT

Re: Sisters with Mets...should I stop Herceptin?
 

Hi Kim,

Glad to hear you are doing so well, and glad you brought this up.

I am going to be talking to my Onc. about stopping Herceptin at my next appt. I have been NED in my body since 2002. My brain tumor was in 2005, but I suspect that those "seeds" were already there from my massive liver involvement in 2001.

I had always thought that if I made it 5 years since any recurrences I would try going off the vitamin "H" , but my Onc sort of talked me out of it. He had gone to a symposium last year and mentioned me to a colleage, who was a specialist in BC (can't remember his name now) , and his oppinion was that I should stay on it forever.

I feel in my heart that I wan't to at least give stopping a try. I am also concerned about being on the Femara for so long (9 yrs.) My cholesterol is now elevated and I had to go on blood pressure meds 3 yrs ago. I have always had extremely low blood pressure so this is a concern for me.

I don't do scans anymore, just monitor things with tumor markers and occasionally Her2 serum test. This is because of the concern over so much radiation exposure. If I were to stop the Herceptin, I would be a little worried about not doing scans, so that might have to change.

So much to consider.......but I'm still going to pursue it.

Kim

Re: Sisters with Mets...should I stop Herceptin?
 

Kim,

I hope to be in your position one day with my oncologist asking me to consider stopping Herceptin. Wow! But it's a tough choice to let go of the security blanket, so I don't blame you for being nervous.

Joan

Re: Sisters with Mets...should I stop Herceptin?
 

Hi Kim -
Great to hear from another "liver mets" buddy that all is well after this period of years.

Sorry to hear about the blood pressure problem. Mine is still on the low/normal side, but my hubby has to watch his so I know about that.

Our brain mets were also about the same time, so I hope all will be well with you as with me.

We have not heard back from our friend Mamacz as to her final decision on stopping Herceptin. It gets easier, especially after the first 6 months when you get out of the routine of going for infusions.

Take care!

Re: Sisters with Mets...should I stop Herceptin?
 

Gosh it is a big decision Kim and i also think of Jackie(jhandley). "If it ain't broke, don't fix it"
Re Femara, i am nearing the end of it for me and i am terrified of going off it. I feel it has kept the cancer at bay and if i go off my oestrogen will cause a recurrence.
Good luck with your decisions.

Re: Sisters with Mets...should I stop Herceptin?
 

stephn,
your story sounds encouraging! by the way, did you ever take complimentary therapies along with your standard care? how about the other ladies in this thread?

Re: Sisters with Mets...should I stop Herceptin?
 

Hi Girls!
I love reading your opinions and ideas...and I am sorry for being absent for a while...I have this trouble of getting distracted with kids, holidays, sunshine...
StephN! How wonderful to see you and hear that you are still doing well! Is the wine store still doing well? And Kim! I feel like this is old home week and I am getting caught up with life long friends. I am just so darn happy that you both are doing well.
Yes, I did sleuth this out and here is what I found out. I spoke at length with Dr. Dang at Sloan. She has several her2 patients who are being maintained with mets. Her opinion is that yes, we can take a holiday from Herceptin. Many of her patients have stopped their Herceptin but they have all reoccurred at some point. Some as soon as 4 months and others have not reoccurred for 2 years. When she sees a renewal of cancer activity, she restarts the Herceptin and they continue to respond.
I am also worried about the radiation from all those scans. I have decided to stop the scans and go instead to tumor markers; traditional and Cell Search Circulating Tumor Cells. If one or both markers rise; then I will get a scan. Finally, I have decided to take the summer off from Herceptin from mid June through Mid September.
OK, enough yakety yak from me. While thanking God for many years of NED we will also have to continue to compare notes! I love hearing from you!
Love Kim from CT

Re: Sisters with Mets...should I stop Herceptin?
 

Kim
I think you have a great plan. I think it's well thought out and you are on the right path. I wish you the best, best, best, and that your markers never rise. You are an inspiration to us all.
Love
Karen

Re: Sisters with Mets...should I stop Herceptin?
 

Hi Kim
Good luck with your plan. I am really glad you have let us know.

Do you still get any side effects from herceptin?

Did Dr Dang give you any idea how long some of her patients have been maintained on herceptin?
My own onc says 5 years max which is why I tell him about others like you on the board!

I wonder if there are any stats about long term survivors that have stopped herceptin and not recurred? I am thinking of Steph and Andi BB?

Ellie

Re: Sisters with Mets...should I stop Herceptin?
 

Kim, I wish you the very best as you take your break from Herceptin. I hope that you have the wonderful results that I have so far. As I told you, my onc said that if it came back he and Dr Slamon agree that the Herceptin will take care of it. Have a great summer with your family. Best Wishes, Mary L

Re: Sisters with Mets...should I stop Herceptin?
 

Hi all,
Ellie - side effects with Herceptin? Yes - after 7 years....sore joints, nonstop runny nose...but nothing compared to the alternative; right?!

Dr. Dang has "many" Her 2 patients with mets - although I didn't ask her for a count.

However if you really want to feel hope beyond belief; attend an annual meeting of the MBCN group (www.mbcnetwork.org). The conference organizers start each annual meeting by asking for a show of hands...how many have lived 1+ years with mets; 2 + years, 5 + years, 10 + years, and yes they go up to 15, 20 and even 30+ years. That moment ... looking around the room and witnessing all the angels who live everyday lives with this is a simply hope filled moment of bliss and well worth the annual trip.

And Karen, hang in here with us. It sounds like you are getting good treatment and so far have had a positive response.

Love and Hugs,
Kim from CT

Re: Sisters with Mets...should I stop Herceptin?
 

Hi Kim
Thanks for responding and for the encouragement.
The reason I asked was in my own informal way I was trying to figure out if side effects were an indication that herceptin was working.
I am also very encouraged that your mets were also er/pr- which according to all the literature suggests holds a worse prognosis.

I will be keeping everything crossed for you over the summer whilst you have your herceptin break.

Hugs
Ellie

Re: Sisters with Mets...should I stop Herceptin?
 

Hi Kim and Everyone!

Well..... I saw my Oncologist yesterday and I have his blessing to STOP the herceptin. I'm still a little giddy, and overwhelmed at the same time.

The plan is to do Tumor markers and Her2 Serum in 6 weeks, and see how things are at that point. After almost 10 years of getting my Vitamin "H" every 3 weeks, I haven't quite processed how I feel about all of this. I unexpectedly burst into tears twice yesterday, just feeling overwhelmed by what seemed to be this monumental decision I've been pondering for so long.

I'm going to stay on the Femara for now. If I'm able to stay NED without the Herceptin, we will consider dropping the Femara next year, as it will have been 10 years for it too.

Kim (or anyone else) , can you tell me where I can find out more about the "Cell Search Circulating Tumor Cell" test you spoke of ? I would like to use all tests available to monitor things without having to do more scans.

I'll keep you all posted on how things go.

Kim in CA

Re: Sisters with Mets...should I stop Herceptin?
 

Hi Kim...
This is OVER THE TOP news! It sounds an awful lot like maybe you have...dare I say it.... a cure going on....WOW!
I was thinking the Cell Search CTC is the same as the HEr 2 serum test...but after some sleuthing, I see that they are different. I am copying information on the Her 2 serum test to bring to my oncologist. If you would like more info on the Cell Search; this is it:
http://www.veridex.com/cellsearch/Patients/FAQ.aspx
Good luck! Let's stay in touch periodically if things change...
Love Kim from CT

Re: Sisters with Mets...should I stop Herceptin?
 

I don't have any advice to offer i just wanted to say Kim: you're amazing!
-sue

Re: Sisters with Mets...should I stop Herceptin?
 

Hi Kim;
Just chiming in to wish you well on your summer off with Herceptin. What great news!
Hugs,
Kris......

Re: Sisters with Mets...should I stop Herceptin?
 

Hi Kim and Kim -

We have all walked a long time with this disease and been here to chat coast to coast about how we are and how we feel about that.

The question about Dr. Dang's response was "how long had those patients who recurred been NED on Herceptin?" Were they in OUR league, or are they a good comparison?

People stop taking their drugs for a variety of reasons, so such a very general answer leads to more questions.

Anyway, enjoy the summer away from your medical center, and focus on families and fresh air.

Re: Sisters with Mets...should I stop Herceptin?
 

So happy for both of you, I have done very well for 3 1/2 years and just had my scans run and everything was fine. I wish you both the best and hope you stay ned. Have a wonderful summer. Mary L

Re: Sisters with Mets...should I stop Herceptin?
 

Hello, I am new to this thread. wanted to ask StephN, Mary L how are you doing as we are now in the end of Sept 2011. Are you still NED? I 'd love to hear from you as you are an inspiration to a lot of us here. Also, i haven't seen any more posts from christine the founder of her2, i just hope that she is doing well while she is off herceptin too. PLease let us know.
Thanks
Ema

Re: Sisters with Mets...should I stop Herceptin?
 

Hello -StephN here,
I am traveling so just found this. My checkup in August could not find any trace of active cancer. It is now getting close 3 years since I have stopped Herceptin, and feel very well.

Christine is also doing well cancerwise, last I spoke to her. So, that makes two of us.

All the best.

Re: Sisters with Mets...should I stop Herceptin?
 

Kim and everyone else on the board,
Thanks so much for posting. It gives me so much to look forward to, I am almost in tears. I too am stage IV and want more than anything else in the world to become NED, and one day stop treatment so I can expand my family, as I am only 30. Kim, please stay in touch with the boards so we can all continue to hear your journey when and if you stop herceptin. My oncologist, like yours, says that after an extended time of NED, it is okay to stop treatment. I have nothing else to offer except that......the more women that take that scary jump and get off herceptin or what ever treatment..... the more doctor's will learn and hopefully one day millions of women will be able to avoid excessive treatments after becoming NED.

Not to take the decision out of your hands or to belittle your own judgement.... just something to think about. Even though its not a clinical trial (to end treatment) its still an important clinical question to answer..... how long.

Re: Sisters with Mets...should I stop Herceptin?
 

did jackie die?