Sisters with Mets...should I stop Herceptin?

[mamacze]

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]

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]

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

[Lauriesh]

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]

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]

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]

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]

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]

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]

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]

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]

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.]

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]

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]

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]

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]

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]

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

[mamacze]

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

[Kim in CA]

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

[Joan M]

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

[StephN]

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!

[chrislmelb]

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.

[trasia]

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?

[mamacze]

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

[KDR]

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

[Ellie F]

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

[Mary L]

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

[mamacze]

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

[Ellie F]

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

[Kim in CA]

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

[mamacze]

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

[loveher]

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

[krisvell]

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

[StephN]

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.

[Mary L]

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

[EmaB]

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

[Unregistered]

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.

[KristinSchwick]

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.

[norkdo]

did jackie die?

[Unregistered]

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

[sarah]

Hello Kim,
I can attest to the fact that Stephanie is doing great having just seen her here in France.
Glad to hear you're doing so well. As for the question, I think the advice to take your time is a good idea. You know Herceptin works for you and you've been NED for a long time now so whatever you decide seems to be more on how you feel and how confident you feel tests are for you.
Eventually I think you'll want to go off it but wait until you feel you're ready. Don't do it if you're anxious about going off it.
Take care,
Health and happiness
hugs and love
Sarah

[mamacze]

Warm Greetings to Kim and Steph and Sarah and All,
I am so glad to hear you are doing well and I apologize for my tardiness in responding. For some reason, my computer did not alert me to your posts....could be a lack of cookies as I have recently switched from a Dell to a MacBook Air.
Steph - traveling around France?! How wonderful! Next time make room in your suitcase for me !! And the icing on the cake..you got to visit Sarah! I am pea green with envy!
A quick update....I have been off Herceptin since June 2011. I have had 2 blood tests since (Veridex - circulating tumor cell - cell search); in both cases; my test result was ZERO...ie, ZERO circulating tumor cells detected!). I will keep you posted as we proceed...hope always springs eternal. Hang in there Stage 4 sisters....hope springs eternal for all of us....
Love and hugs and warm thoughts for a cure,
Kim (from CT)

[Ellie F]

Kim
I was only talking about you today to my chemo nurse so lovely to hear from you. Glad things are going so well and I pray you will remain herceptin free and NED.
Do you feel any different now you are off herceptin? I believe like a lot of drugs side effects on herceptin are cumulative so would be interested to know if you now feel any different?
Hugs
Ellie

[StephN]

Hello Kim -

Glad to hear from you that all is well.
A MacBook Air - now I am the one who is pea green ...

As for any differences I noticed after being off Herceptin for a while - my nails grew better and I seemed to get a little more energy. There was also a pshychological lift that happened once the realization set in that I did not have live my life around frequent cancer center appointsments.

It is also helpful for traveling when you want/have to be away for more than 20 days.

All the best my east coast friend!

[mamacze]

Hi Ellie and Steph,
Ellie, I have a good feeling for you; may you, and all of the angels on this site; be blessed with a long, lingering dance with NED.
Do I feel any difference now that I have been off Herceptin for 4 months? StephN said it: ENERGY, energy, energy! Kicking butt in my mixed martial arts class like it is nobody's business! Stronger nails! And yes, a huge psychological lift that comes with going for days and dare I say even weeks, without thinking about cancer...even once!
What hasn't changed? Joints are still sore....nose still runs non stop (guess that is just a function of age...!)
Love and Hugs,
Kim (from CT)

[KDR]

Kim, you are everything I want to be! Stay well, dear one,
Karen

[kstrahm]

I was glad to have stumbled upon this thread and to read all of your experiences. I have been stage IV with liver mets since April 2006. I started with Taxol, Carboplatinum, Herceptin, Femara and the Lupron shot. After about 7 months I went to only Herceptin, Femara, and Lupron. Last year I had a hysterectomy due to Lupron failure and have been on just Herceptin and Femara. The Herceptin over the past few years has been giving me severe side effects - consisting of neuropathy which has progressed to the point of me feeling burning, tingling, numbness in hands, feet, legs, arms, even the tongue and throat as well as constantly dropping things and losing my balance - I have dizzy spells from it and pressure in my head. I have no energy whatsoever and extremely sore upper back and neck.

I have been trying to fight this and stay on the Herceptin but it has came to the point where my onc and I have decided it is time to take the jump off the cliff and see what happens. I have been NED for almost 6 years so we will see. I am extremely nervous but my body needs a break. I hope the break lasts a long time and it has been great reading the stories of the other women on this board who have gone before me. I am hoping for a continued long run on NED but if it comes back at least a break for a time will be nice and maybe I can try to get my body back together before then.

I sort of feel like we are all writing history and that years to come based on all our choices and experiences that those that come after us will have more information to go on.

[Ellie F]

Hi kstrahm
I have been on herceptin since 2008 and totally understand where you're coming from. Most of the symptoms you describe are the same as I am experiencing. The only difference seems to be that my neuropathy is not as severe as yours.i truly believe that herceptin side effects are cumulative.
The question of staying on or coming off herceptin is so difficult. My own onc believes that if you are NED at stage 4 for over 5 years then its time to come off. He says he has a number of patients who have come off before this time and remained cancer free and others that did herceptin to five years and also remained NED. It very much feels like this cancer journey is a lottery.
Good luck with your decision, please let us know how it goes
Ellie

[Lauriesh]

Hi kstraham,

I am in the same boat as you, except that I have only been Ned for 2 years. My neuropathy is getting worse, so I have decided to take a break. We will follow my tumor markers and scan in a few months, and hopefully the break well help side effects go away .

My plan is not to stop completely but maybe get just 5 or 6 doses spread out through the year.


Lurie

[kstrahm]

Hi Ellie - thanks for your response. It is helpful to me to know that others are experiencing neuropathy as well. When it first started for me I think it took a while before my onc. would believe that it was from the Herceptin.

It just seems to me there is not much research out there for people who have taken Herceptin long term and how it affects our bodies. I as you truly believe it is cumulative. I do hope that your neuropathy does not increase as mine did.

I will be updating here over the months as I get scans and let everyone know how it goes. I hope that all goes well with you and that if your time comes to stop Herceptin that you will know when and will have peace about it. It is encouraging for me to hear that your onc. has had some patients off after 5 years that are still NED. I think you are right it really does seem to be like a lottery in this crazy world we call cancer.
Hugs to you!

[kstrahm]

Hi - thanks for your response it seems like you are in the same boat I am in with the neuropathy. As I mentioned above to Ellie it is good to know others are experiencing the same side effects I am in regards to neuropathy. I just don't think the long term side effects are really widely known yet. We are blazing the trail!

I hope that your break helps you and am glad you have a plan. For now we will be doing scans and lab about every 8 weeks to keep an eye on it. I am hoping for some good quality time before anything shows but am glad the onc. is keeping a close eye on it. Good luck to you and let us know how you come out.
Hugs to you!

[Emy]

Kim....
I would get a second and a third opinion before stopping....In my opinion, I would be afraid to stop, for fear of recurrence......
Eileen

[Whonoze]

I began Herceptin in February 2007. Have been NED since completing it and chemo. Have remained on. Spoke to my onc last week about going off. Not that I'm anxious to do that. She encouraged me to stay on. Because I was Stage IV from the git go, and it had gone into my liver and bones.

I have an easy time with it. Runny nose, bad nails. Don't really know whether it is affecting my energy level. Since, some lessening of my energy is thankfully due to age.

I am very grateful and am awfully happy to be here and to be discussing making the choice.

[CoolBreeze]

Wow, I'm jealous of all of you who have hit NED, and for years too. I haven't been NED once and herceptin, perjeta, my 7th chemo, I just keep progressing. All I want is to see my son graduate from high school next year but it is not looking good for me.

I start TDM1 next. Let's hope that's the miracle for me you all got.

[Joan M]

Ann, I'm praying that T-DM1 does the trick for you for NED, like it has for other women on the board. Hang in there, girl!!

I complain to my onc that H is ruining my nails, but he disagrees. Otherwise, my symptoms from H have been moderate, and thankfully my heart has been holding up. I get an echo every 6 months.

I also wonder about when I would consider stopping H if I continue to be NED. I've been NED since October 2008. My cancer advanced to stage 4 in January 2007, and I have been on only H since it advanced because I chose local treatments to remove the nodules. My onc offered Xeloda (6 months) and Tykerb, but I turned them down. I often think about a vaccine trial, but I'm afraid to upset the apple cart. My body seems like it's in some kind of balance thus far (who knows?), and I'm afraid that a vaccine could counteract that. I had CT scans of the chest, abdomen, and pelvis a few weeks ago, and all is still NED.

It seems like a mixed bag of whose tumors come back, and I'm not sure whether that's tied to how long you've been on H. It might just be individual.

Joan

[mamacze]

Hi Girls,
Forgive me for not updating this thread. I kicked up my heels for only eight months because a scan in Feb 2012 showed a return of tumor in my lungs. In a blink I was back on Herceptin. For me it works. CoolBreeze - I am fervently thinking of you and am filled with hope that T-DM1 will be your charm. You are bright and tenacious. Knowledge is power. I feel like you are heading toward a good long break.
Love and hugs,
Kim (from CT)

[laura4252]

Kim from CT, Can you please give us an update on your status since you posted in 2012? Your diagnosis is very similar to mine, however I never did the taxanes since I'm allergic to them. Have used Herceptin only, some Navelbine and Gemzar in 2012, and now on 4th cyle of TDM1, and having excellent response (breast tumors 1/3 the size they were). Thanks Kim

[mamacze]

Hi Laura4252,
I am so happy to hear you are doing well on TDM1. My oncologist says that TDM1 will likely be my next line of treatment when my mets start to act up.
I continue on Herceptin infusions every 3 weeks. That is it. Except for my one short 2011 holiday from Herceptin, I have been getting Herceptin infusions since May 26, 2004. The one small tumor in my lungs remains - and is stable. It doesn't get bigger or shrink thus far. I had a biopsy done on that tumor. It has a PIK mutation and there is an off label drug that has shown some promise against that type of mutation if I need it. And while the Herceptin isn't intended to address a PIK mutation, the tumor is behaving. So we figure, if it ain't broke....
I will keep you posted.
And YOU, hanging in there and doing so well - are you experiencing any side effects from TDM 1? How are you and your family handling all of this?
XO Kim (from CT)

[Andrea Barnett Budin]

Well, I am surely late to this party. Sooo sorry. I was reading away just now and around page 2 I noticed -- 2011...???!!!! I kept on reading.

Just reporting in, as I wish those who are not NED prayers and hopefully some inspiration.

4th stage from the getgo (1995). Recurred in August of '98 throughout my liver. Terrified. Only then did they test for HER2 which I asked for, having kept up on the bc world as a highly interested recovered patient, or so I thought. Tested 80% positive. That's how they graded it back in the day. And I was glad at that news, since Dr. Slamon had not only isolated that misbehaving gene but helped develop Vit H to correct it. Despite the horrid statistics I felt I had genuine hope.

I did Taxotere for 9 mnths (ev wk for 6 wks, off for 2). Added Herceptin 2 mnths in, to make sure the Taxotere was working. It was shrinking my multiple tumors. Onc was having radiologist measure ea and ev one. I'd gather my reports and compare.

Was on Vit H from Nov of '98 till July of '08. June scans will PLEASE say I am still STABLE. Blood work in January attests to that potential outcome.

I WAS PREPARED TO REMAIN ON VIT H FOR THE REST OF MY LIFE, WHICH I ALWAYS SPECIFIED WOULD BE A LONGGGG LIFE FULL OF HEALTH AND LOVE. MIGHT AS WELL BE SPECIFIC IF WE'RE DREAMING, RIGHT?

ABOUT 5 YRS OUT, MY FAV ONC SAID I COULD STOP H. (HE SAID HE'D JUST ATTENDED A CONFERENCE WHERE DR. SLAMON SAID 5 YRS WAS AS GOOD AS 10.) I WASN'T READY. IF IT ISN'T BROKEN, BLAH, BLAH, BLAH... MY OTHER ONCS CONCURRED WITH ME, AS DID MY HUSBAND. MY FAV ONC WENT TO UNIV OF TENNESSEE TO HEAD THE ONC DEPARTMENT, BE A PROFESSOR. THAT WAS WRENCHING. HE RETURNED TO BOCA 5 YRS LATER.
I RAN TO HIM OF COURSE WITH OPEN ARMS. AND I KNEW -- FIRST THING AFTER HUGS WAS -- YOU HAVE TO GET OFF OF H. I THINK I WAS READY.

NOTE: FOR THE FIRST 3 YRS OF BEING ON H, I WENT WKLY. AFTER 1 YR MY FAV ONC SAID, THEY'VE DONE STUDIES IN FRANCE AND YOU CAN GET TRIPLE THE DOSAGE EV 3 WKS. VERYYYY TEMPTING, BUT NO. I'LL WAIT. I WAITED 2 YRS TO MAKE SURE EVERY ONE OVER THERE WAS STILL ALIVE. THEN I GRADUATED TO EV 3 WKS FOR 7 MORE YRS. I AM CAUTIOUS!!!!!

I STOPPED H IN JULY '08. I WAS GETTING SCANS AT THAT POINT EV 6 MNTHS. LAST YR I GRADUATED TO ANNUALLY. MY EV 3 MNTH BLOOD WORK BECAME EV 6 MNTHS. IT WAS SCARY, I'M NOT GOING TO LIE. BUT I MOVED FORWARD WITH A DEGREE OF COMFORT. I SEE MY ONC EV 6 MNTHS. I GET A SONO W/MY ANNUAL MAMMO (UNILATERAL), WHICH STILL BEFUDDLES ME. I THINK OF MY LEFT BREAST AS MY LEFT BREAST. THE MEDICAL WORLD SEES IT AS A STOMACH I SUPPOSE, AS THAT IS FROM WHERE IT CAME (TRAM FLAP).

I SAID TO MY HUSBAND, IF I WERE TO GOD-FORBID GET CANCER THERE -- WOULD IT BE STOMACH CANCER??? WE LAUGHED. WE MUST KEEP LAUGHING...

AFTER H THE BIGGEST PERK WAS UNEXPECTED. I WAS SOOOO ACCUSTOMED TO GOING EV 3 WKS (ALWAYS BROUGHT BAGELS FOR EVERYONE W/CREAM CHEESE, THEY LOOKED FORWARD SO TO MY VISITS!!) THE BREAK FROM SEMI LIVING IN THE CHEMO ROOM WAS EXHILERATING. I HADN'T REALIZED WHAT A TREMENDOUS PSYCHOLOGICAL TOLL THAT FAMILIAR TRIP WAS TAKING ON MY PSYCHE. FINALLY, A REAL VACAY!!!!!!

THIS IS WHAT I PRAY FOR FOR EVERY ONE OF MY SISTERS.

I DO MY SUPPLEMENTS TWICE A DAY, EVERY SINGLE DAY, SINCE OCTOBER OF '98. FOR ALL THE REASONS I MENTION IN MY THREAD -- WHY I TAKE SUPPLEMENTS, IF YOU'RE INTERESTED.

I MEDITATE. EVERY DAY.

MY FINGERNAILS WERE AWFUL ON H. MY ENERGY IMPROVED OFF H, BUT I SUPPLEMENT. (I TAKE POWDER FOR CHRONIC FATIGUE AND B-12 SUBLINGUALLY EVERY DAY, PLUS, PLUS, PLUS...)

THE NEUROPATHY I HAD WAS TRULY PAINFUL BUT THAT STOPPED WHEN I STOPPED TAXOTERE.

EVERY BODY IS DIFFERENT. EVERY CANCER IS DIFFERENT. EVERY REACTION TO MEDS IS DIFFERENT. I FERVENTLY PRAY YOU EACH FIND YOUR PERFECT RECIPE FOR SUCCESS. WITH ALL MY HEART, THAT IS WHAT I WISH FOR YOU.

SO THIS JULY WILL BE 5 YRS OFF OF H.http://cdn-cf.aol.com/se/clip_art/peeps-emt/pple/clips/notworthy-clip
I SERIOUSLY BOUGHT A SMALL PEWTER FIGURINE, ON BENDED KNEES, ARMS OUTSTRETCHED, PALMS DOWN, FOREHEAD TO THE GROUND -- TO REMIND EVERY SINGLE DAY -- TO LOOK UP AND SAY THANK YOU. THANK YOU FOR MY LIFE.

SENDING BLESSINGS AND HEALING LOVE AND LIGHT TO EACH AND EVERY ONE OF YOU...
Andi

[kstrahm]

Just thought I would pop in and let everyone know that my Herceptin holiday continues. My last set of scans were A-OK! This makes about 10 months off of the Herceptin. The toxic neuropathy has improved but not completely ~ the onc. says some of the damage may be permanent.

I have scans on March 15 but have been having some intestinal issues and weight loss as well as some pain in the liver area. This may be due to the fact I have been on antibiotics for 2 weeks for an infection. If it keeps acting up I will call the onc. and see about moving the scans up.

Hoping and praying it is nothing and I can continue on this Herceptin break!! Wishing you all well!!

Hugs,
Kelly S. (Kansas)