Stopping Herceptin after 3 years

Barb · 12-08-2006, 05:37 PM

Hi girls, haven't been here for some time.
To recap briefly, 2001 Stage 3 bilateral mastectomy with 18 (11 infected) lymph + others removed. AC, radiotherapy, CMF. Remission for 18mths. 2003 Mets to bone, radiotherapy, 5mths taxotere and Herceptin. Everything stable for 2yrs.
I have been on Herceptin since October 2003 and apart from fairly severe peripheral neuropathy (from too much Taxotere) and fatigue problems, am pretty good for an old girl!
My oncologist is asking if I have considered coming off Herceptin. My family is not keen on the idea as they feel like me, it has kept the cancer under control. I know Herceptin can stay in the body for many weeks now, but indefinitely or is the cancer gone - who knows?
I remember reading last year of ladies in the US who have been on it for several years and I was wondering how they are nowadays, have they come off it for any period of time, would they consider coming off it and if they did, what kind of monitoring are they getting.
Looking forward to hearing from you
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Lolly · 12-08-2006, 11:36 PM

Hi Barb;

I can relate, I've been on Herceptin since 2001. Always thinking in the back of my mind that I could someday come off tx if NED for a "comfortable" period of time, but that has not happened. The closest I came was after tx for Primary Disease /Recurrence 6 months later/Herceptin +/- chemo since 2001.

Barb · 12-09-2006, 12:13 AM

Nice to hear from you Lolly. Having herceptin indefinitely is a bit open ended, no-one seems to know if you should stop it - until or if it returns!!! I don't think I'll be opting to come off it. My husband says he's coming with me next time when I see the onc, he's got lots of questions he reckons!
How long are you going to be on Xeloda now and Herceptin, is that indefinitely like mine?
Take care Barb

Lolly · 12-09-2006, 10:56 AM

Barb, I just tried to reply to you but lost the post! Now have to go to town, will get back to you tonight.

Barb · 12-09-2006, 12:27 PM

Hi Lolly
Just to let you know that I got your brief message before you lost the post! So glad to hear that others seem to lose their way here. I have no idea how I posted this 'new' thread of mine on the Inflammatory BC thread!! In fact, I'm not sure that this mail is private now!!
Wait to hear from you.
Barb
PS And what do we put in the Title (ie above the Message)?

Lolly · 12-09-2006, 07:06 PM

Hi Barb,

I think sometimes there are gremlins about

Anyway, I'll try to answer your earlier questions again:

Yes, I'm on Herceptin indefinitely now and Xeloda until scans in January will hopefully show me to be NED (No Evidence of Disease) again. Then I'll stay on Herceptin maintenance.
I only know one person who is Stage IV, NED, and been taken off Herceptin. She's still NED going into her 3rd month of no treatment, after lung mets. Her onc is in the same group as mine, but my onc has been leaving the decision up to me. So far I'm not anxious to test the waters. I'll have to be NED for awhile before I'd feel comfortable stopping H. The closest I came was after first recurrence, when I was in remission for 2 & 1/2 years and we were starting to discuss going off Herceptin, but then I recurred again. There is a school of thought that a Herceptin holiday in Stage IV disease is beneficial to the heart, and that if the rest period is long enough Herceptin could be restarted if needed and still be effective, as the cells sort of "forget" they've been exposed to an agent. My onc's group uses this stop and start protocol with chemo agents quite effectively, so I think that's the theory behind the Herceptin Holiday.
I would definitely ask your onc lots of questions, and ask for whatever data he's using to back this up.

Good luck to you!

<3 Lolly

Barb · 12-09-2006, 08:02 PM

Hi Lolly
Thanks for that info, I found it most interesting to get info from a different country. Think Herceptin has been in the US for quite a few years, right? Even between states here, there are different protocols, (even flushing portacaths there are differering views!!). Anyway, will let my husband see what you have written and then we can think about it more. I'd really like a break - I like the word 'holiday!' - just not having to go to the hospital, bad enough when I have to visit friends which seems to be quite frequently lately!
When you were in 'remission', was it really remission or were you stabilised, how often were you monitored before it recurred? ie how often did you see your onc and have scans done? Presently, I see mine every 9 weeks and scans done every 6mths.
Thanks Lolly
Barb
daisy10@westnet.com.au

Lolly · 12-11-2006, 11:16 AM

Barb, I sent you a private message, just click on the link at the top of this page...

tnbelle22 · 02-14-2007, 10:44 AM

Hi! I was diagnosed in 2001 with 2 nodes involved and had 6 chemo treatments after mastectomy. The cancer came back in liver in fall of 2004. That is when I received chemo and herceptin. I stopped chemo in March of 2005 but stayed on herceptin every three weeks. I am NED and have been getting the herceptin every three weeks since March of 2005. At one time my doctor discussed me coming off the herceptin because insurance would eventually quit paying. However, recommendations have changed and we plan to use it as long as it works and I have no side effects or problems.

Lani · 02-15-2007, 12:06 PM

speculating, they would start a clinical trial measuring serum her2 ECD, circulating tumor cells and periodic bone marrows looking for isolated tumor cells in those on herceptin to see if the dormant cells (probably breast cancer stem cells) which lurk in the bone marrow and are probably responsible for recurrences are present at baseline, respond to therapy, and are obliterated before considering stopping herceptin in a stage 4 patient (and if they recur after/while weaning off of herceptin)

Otherwise, they have to wait years to get the stats on lots of patients whose tumors may have very different characteristic and perhaps should not have been lumped together in the first place eg. perhaps different subtypes of her2+er+ breast cancer fuelled by different pathways which ends up painting a muddied picture which is difficult to interpret anyway (especially as so many take flaxseed oil, olive oil, curcumin, and some exercise and some don't, etc--all these things make the statistics less meaningful.

Here's hoping that Individualized treatment becomes the norm in the future.