How long Should I continue herceptin ?
 

I haven't posted in a while, it's been two years I'm NED and onc. Is talking about stopping herceptin. I have been on herceptin on and off for about five+ years. Anyone else a long term herceptin user? The one time I did stop my cancer came back within 3 months, so I'm a little afraid to discontinue it. My heart is good and I have no noticeable side effects. Any advice or experiences would be greatly appreciated! I'm currently stage 4 NED had a lung met in 2011 removed with surgery and taking tamoxifen. Really want to remain NED!

Re: How long Should I continue herceptin ?
 

I don't think I would EVER go off Herceptin.

Re: How long Should I continue herceptin ?
 

I think if you're tolerating it so well why fix something that isn't broken and I'd stay on it if possible.

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Hi
Just wondered what your oncs reasoning for coming off was? I have debated the same issue with my own oncologist but its problematic as there is very little research out there. My oncs current view is to keep his stage 4 patients on herceptin for 5 years if they remain NED then stop! There are a few women on the board who have stopped herceptin but after a much longer time and have stayed NED. There are others however that have stopped and the cancer has returned. This seems to be what my own onc had found judging by his answers. The problem is all this feels like such a lottery!

Ellie

Re: How long Should I continue herceptin ?
 

I agree, it does feel like a lottery! I wish there were more information about it. I agree with all of you, why stop when things are going so well! Going every three weeks is better than the alternative of having something pop up again. Thanks for your input, I always appreciate it!

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Good luck, Raquel!

I believe I heard Dr. Slamon say within the past year or so that staying on and in remission for 7 to 8 years is a better bet than 5 years.
And I don't think he makes any statements that are not backed up by study and research.

In my case you will see that I was on Vitamin H for over 7 years. Probably would have remained on longer if my second port had not given me trouble. When I stopped it was with the intention of taking a little break of maybe 3 months to work the port problem. Using 3 tumor markers and scans I decided to see if I could go longer. So far, so good!

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Thanks for the info I will mention it to my onc and the fact that I know all of you who have been long time vitamin H users! I like that, had never heard of it referred to like that! I think my mind is made up to continue on it!

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Steph
Can you remember when and/ or where Dr Slamon said staying in remission for 7 plus years was better than 5 years! I to believe he only says these things when he has good evidence
Have tried a search but came up with nothing.
Many thanks
Ellie

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Hi Ellie -
I heard it from a patient who sees him that I met in San Antonio at the Breast Cancer symposium. I am not sure who else from our group was there but I do recall discussing that with Chrisy, who is not here to tell about it. Chrisy was not there last year so either it was the year before, or we emailed about it.

I will have to look it up, but Dr. Slamon moderated a presentation for an evening session that some of us went to. He may have been answering a question after the event ended. So, I could well have heard that twice.

Maybe Alice or someone else can add something.

Re: How long Should I continue herceptin ?
 

Thanks Steph
I am trying to get my information together as it seems to be becoming an issue at my centre that they stop herceptin if NED at 5 years. As there's very little research out there I felt a view from Dr Slamon would be very valuable.
Ellie

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Ellie -
Did you see Leah's thread about going to a BC meeting where Dr. Slamon will speak?

She will try to find out more next week directly from him. (If she can do so well with Montel, she can approach the great doctor!)

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Thanks Steph, I missed that post completely. It would be just brilliant if she could find any information out !
Ellie

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Hi Ellie, Steph and Raquel,

I will be listening intently to what Dr. Slamon has to say on Tues. and will report back.

Last night I was told that as the "special" guest of a "special" guest (my friend Susan) she and I have been invited to a private reception with PA Gov Corbett wife (also named Susan) and (my friend is pretty sure) Dr. Slamon and the two other award recipients.

If I get a chance to speak to him I will definitely ask this question for you. My plan also is to give him a Thank You card (on which I have included a link to HER2Support) and a picture of my daughter (on which she wrote "thank you for saving my mommy")

I am very excited to go to this conference and over the moon that I might get to talk with Dr. Slamon. I told my husband I feel like a teenager who just found out she may get to meet her favorite rock star....

I will let you know what happens.

Best
Leah

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Hi Leah
Thank you so much for offering to ask our hero the question! As there is so little research on how long to stay on herceptin if stage 4 and NED I feel his opinion is so valuable. Not only is he a brilliant researcher he is also an excellent clinician so I can't think of anyone better to answer the question!

Ellie

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I would try to stay on it as long as possible. I was on it for 6 years and hoped it would be enough but we'll have to see.......I'm now 2 years out from there.

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Hi Sarah
May I ask why you came off at 6 years?

Ellie

Re: How long Should I continue herceptin ?
 

My fav onc wanted me to stop at 5 yrs. I couldn't let it go.

Orig dx w/stage 4 invasive lobular pleomorphic bc, involving 2 out of 21 nodes ('95) pre Vit H access as it was in clinical trails -- I recurred in '98 (tumors throughout my liver). I was told grimly and hesitantly that what I had was INOPERABLE, INCURABLE and that I WOULD BE ON LONGTERM CHEMOTHERAPY FOR THE REST OF MY LIFE. Herceptin became fast-tracked to all metastatic bc-ers 1 mnth after my metastasis.

So, when I could no longer tolerate Taxotere (fluid around my lungs and heart and lots more) after 9 mnths, I went on just Vit H. I intended to remain on it -- forever. For the rest of my life, which I believed would be well into my 90s...

When onc wanted me to stop after 5 yrs, I resisted. Strongly. I remained on for 10 yrs. Onc then drew line in the sand and pushed me.

I've now been off for 5 yrs and am still STABLE. I am now up to annual CTs (chest/abd/pelv), ev 6 mnth bld work including 2 tumor markers, ev 6 mnth exam (mnthly self exam), mammo w/sono 3 mnths after CT...

I would have to say, Don't let go of your safety net just yet. I am not a medical professional. But, I agree, too many go off and have recurrence I've noted, and it just isn't worth risking it, IMHO...

Sending you love,

Andi

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Hi Ladies,

I just got home from the PA BC Coalition Conference. A wonderful, informative day. Empowering.

I was able to meet (hug and kiss) Dr. Slamon briefly. I did ask him point blank how long he thought a stage 4 who is NED should remain on Herceptin and his answer was "3 to 5 years".

I have to gather my thoughts and notes on the day and then I will post more about it.

Very humbled and thankful right now
Leah

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Hi Raquel,
I was on Herceptin and NED for 8 years. I went on a Herceptin holiday and within a 4 month period developed 2 small tumors on my lungs. I am back on Herceptin, the tumors remain but have not grown. Going off for me was a tough call. After consulting with oncologists at Yale and Sloan, it was clear there was no recommended protocol. Since I have resumed Herceptin, my oncologist says...."if it is working? Don't change anything; not even your underwear....!!"
Good luck with this tough decision.
XO

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Hi Leah
Many thanks for asking our question. This period seems to be gaining popularity with oncs here so I am interested that they are following what Dr Slamon recommends!

Kim
You were very much in my thoughts when I replied to this thread. It's very clear that we really are still a long way off understanding fully the impact of herceptin on individual tumours and whether/ how this is influenced by the genetic make up of the individual tumour and the immune system.

Ellie

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Heck. I was on H for 10 yrs. I have been off for 5. And still the answer to our big question remains UNKNOWN!

Is no one studying the likes of US?????

Re: How long Should I continue herceptin ?
 

Hi Andi
Looks like there's very little research out there! Think there may be lessons uto learn from women like yourself who have remained NED after stopping! It may give clues and directions to why that is and maybe unlock some keys that could help others.
Ellie

Re: How long Should I continue herceptin ?
 

When I had the good fortune yrs ago to meet Dennis Slamon, while visiting Mark Pegram in Calif visiting my dghtr who lived there, I brought my file. About 8" tall...

A nurse stopped in as my husband and I were chatting with Mark, and mentioned Dr. Slamon was in the office. This was during the yrs that these partners had split, as Denny was totally into research.

I announced that I AM NOT LEAVING THIS BUILDING TILL I MEET DR. SLAMON! Everyone smiled and the nurse looked like she was on a mission. About 5 min later, a knock on the exam door and -- it was Denny.

I stood up in my 2" heels, on the step of the exam table, making me a whole lot taller than my 5'3" and Slamon walked in. After all I was a 4th stage HER2er who had received Vit H just as I'd recurred throughout my liver and had been on it for about 5 yrs then. H had been fast-tracked by the FDA 1 mnth after my recurrence. So I was among the few who could claim this.

I threw my arms around his neck, as he stood, 6 ft +++ tall in front of me. We both hugged. I found myself saying, THANK YOU. THANK YOU FOR SAVING MY LIFE. What awesome words to utter. Of course, I'd never said such a thing before ever.

He was as thrilled to meet me as I was to meet him. Paul, darling hubby, stood and they shook hands. All gleaming. Dennis announced that Mark had been a part of the team who developed H, and I belatedly thanked him as well.

We chatted for a bit. Dennis asked me if I would take part in a study they were doing of longterm survivors on H. Though I lived in Fla, I took part OF COURSE by phone, by mail, swabbing my mouth at specific times of day for days and shipping my cortisol levels to his research team.

I took several hrs of phone interviews asking all sorts of questions and had extraordinary conversations with these young women.

I had asked for the results to be sent to me.

I never received anything.

And now as I scour the Internet for info about the duration of H as recommended I basically see UNKNOWN. Some say a yr. Others 3 or 5. But I have seen some who go off at 7 and recur within 4 mnths. I'm glad I stretched it to 10 yrs. And I've been off for 5, still stable. NED.

BTW, Paul and I felt like we were walking on a cloud for the rest of that day in Calif (Santa Monica @ UCLA)! WE FELT AS IF WE'D JUST MET ELVIS! An absolutely awesome experience I will never ever forget. Nor Paul.

Paul had called Slamon when I recurred in '98. Slamon took the call and spoke to this total stranger at length, both concerned w/this man worried about his wife who had just found out she was HER2+ (80%).

We were aware of the clinical trials and the discovery of the gene and I asked to be tested in '98. They didn't test for that in '95. But the thing had been IN THE WORKS for a good 10 yrs!!!!

Maybe we shouldn't be so slow to approve drugs in America. Other countries seem to have access before we do. In '98 H was fast-tracked because women were being given 3 mnths to live and wanted to try this "new" drug that women in other countries were on!

The stringent clinical trials alone are beyond arduous and difficult to attain monetarily. H was in the 2nd phase of clinical trials when they determined FINALLY to forgo the 3rd phase and get it out there. At that time, to metastatic patients only.

Slowly over the yrs, H became available to first liners, which I believe may well have totally changed the course of many many lives profoundly.
Andi

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I'm glad I popped in to read this and your reply mamacze. I have been on Herceptin and NED for 8 years (lung mets) and have been recently thinking about getting off of it. I have gone from doing it every 3 weeks to once a month, for the past year and half. I think I will stay on it as long as its working. I am so tired of the reminder that I have stage iv cancer but if I quit it and it came back, I would be forever second guessing my decision

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This issue was brought up to me today. I've been NED in the body for 5 years as of August, and if my brain MRI in December goes well, that will be 5 years, too.

I'm very reluctant to go off of it, and I expressed that. It's a security blanket. After all, I'm stage IV and there's not cure. Right? I'm also thinking about Kim in CA who was NED for 5 years and discontinued taking it and then the mets came back. Kim how are you doing?

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I have now been on Herceptin holiday for 10 months. I had previously been taking it for 6.5 years for liver mets and had been NED for 5 years. It was causing me very bad toxic neuropathy to the point I was at a very low quality of life and it was impacting my driving and picking up of things and just daily functioning so onc. finally decided to pull me off.

So far so good but lately been losing a few pounds and lots of intestinal issues as well as a little pain in the liver area but I have been on 2 weeks of antibiotics for an infection so thinking that may be it. I am due for scans and lab on March 15th so if things get better will just go then if things don't get better I will call and see if they can move them up.

For now not wanting to think about it and continue on this most wonderful break. The neuropathy has improved some and quality of life but I seem to have hit a plateau with improvement from the neuropathy. Just thought I would check in so any others considering going off could hear my story.

Hugs to all,
Kelly S. (Kansas)

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Hello Kelley!
Great to hear from you. Glad the holiday continues and you are being closely followed.

Have you tried any physical therapy for your neuropathy? I have found that some simple hand and finger exercises helped me, as well as increasing my activity level. At first I had to push myself, but with time it has gotten easier. (I have some slight tingling in my fingertips as I type this ...)

Re: How long Should I continue herceptin ?
 

Hi Steph,

Thanks for your reply. I have been doing chiropractic care to help with some of my pain and neuropathy issues but had not thought of physical therapy. That is something I will look into. I have used a great physical therapist in the past.

My fingers and toes certainly bother me but the neuropathy had become so bad that it was effecting my entire body - including my mouth, tongue, face and optic nerves.

I can handle the fingers and toes but the mouth and tongue numbness and tingling is what really gets to me. They have me on gabapentin which helps but the tongue numbness and tingling is always present.

I am also going to try and start taking L-glutamine - I am not sure if it will work but have heard that it might.

Glad to hear you have had some relief to your neuropathy. It sounds like you may have some permanent damage too. Hopefully we will both keep improving if we can stay off the Herceptin. I was glad to read that you had been off of it for some time.

Hugs to you!

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Hi Kelly -

I am sure my neuropathy is from the early rounds of taxotere and the 28 weekly taxol and navelbine I had for mets. It never got worse while maintaining on Herceptin alone for all those years.

I did use L-glutamine while on the 28 rounds, so that may have helped me then. Do not know if it will halp after the fact - when you are not on treatment.

In 2012 I blew a disk and lived on several doses of gabapentin daily for almost a year. Last fall I switched to a low dose of Lyrica and that is for my long nerve that foes from spine down my left leg. Lyrica is much more expensive, but the gabapentin was fogging me up and losing its effect on my nerve.

A good PT should be able to help you. Best of luck!

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Thanks Steph!! I will check back in a few months and let you know how the scans go and if I find any solutions to the neuropathy!