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.

Re: How long Should I continue herceptin ?
 

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!

Re: How long Should I continue herceptin ?
 

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!

Re: How long Should I continue herceptin ?
 

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!

Re: How long Should I continue herceptin ?
 

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

Re: How long Should I continue herceptin ?
 

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

Re: How long Should I continue herceptin ?
 

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!)

Re: How long Should I continue herceptin ?
 

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

Re: How long Should I continue herceptin ?
 

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

Re: How long Should I continue herceptin ?
 

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

Re: How long Should I continue herceptin ?
 

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.

Re: How long Should I continue herceptin ?
 

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

Re: How long Should I continue herceptin ?
 

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

Re: How long Should I continue herceptin ?
 

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

Re: How long Should I continue herceptin ?
 

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