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Long term Herceptin

7 REPLIES 7
sarahlousie
Member

Re: Long term Herceptin

I've been on the standard 3 weekly shots ever since 2011 when I was dx with both primary and secondary breast cancer, my heart scans have been good and I've been stable when I asked onc about when they might take me off of it I was told it would come back more aggressive than before! However, I have spoken to a woman on the american breast cancer forum who had been on it for 13 years and took a break who is still cancer free and not on it anymore as with everything connected to this disease we are all individual and react in different ways. I would definitely look into PALS at your hospital to help you with this. Hope you get some help soon xxxx
Chocolates
Member

Re: Long term Herceptin

Hi, I'm on perjeta and herceptin, since 2013 and currently stable.  I recently read some American advice that herceptin could be changed to every 6 weeks rather than three but this is not the standard - certainly not here in the uk.  I agree with the others that in a years time is quite a bizarre thing to say and I can only think that it is to do with money.  For the moment though I would try not to worry about it.  

When the time comes next year and your onc is still adamant then I would go for a 6 weekly infusion instead of three - to me that is a compromise on both parts.  Ultimately, I suppose ladies who have been on this regime for so long are an unknown quantity so they don't really know what to do.  My immediate reaction would be no - I want to stick to exactly what is working for me so please don't change it.  However, I do see the benefits of not going to the hospital every three weeks for the treatment but when you've been so well I would be reluctant to change anything.

 

sorry I've not really offered anything here but ultimately try not to worry at the moment.  You don't need added stress xx

dennymac
Member

Re: Long term Herceptin

Hey! 

 

I have heard of this before I think.  Since you have been stable for such a long time I have heard of people being taken off it as they feel after such a long time youre likely to stay stable and it means they can protect your heart for longer etc.  What my one concern would be would be to ask that if you were to find that the drug WAS singlehandedly keeping the cancer in check if you would be restarted on it again.

 

It really is a tough one as you are bound to want to stay on the drug as you have had such a good response from it, but maybe its not the herceptin alone that is keeping u stable, and, infact your cancer is very good at doing as its told and taking you off the herceptin wont make much difference.  I know a lady that was on chemo and her heart began to be affected and they stopped it to give her a break and 2 years later she hasnt had progression! 

 

Its a tough call, but dont let them force you in to any decisions and make sure IF you do decide to have a break that you can start it again xx

Liz_nz
Member

Re: Long term Herceptin

I am on long term Herceptin and Pertusamab since January 2014 with my condition stable.  At my last oncologist visit she said they won't change anything whilst it is clearly still working.  The results of my heart tests are good although the last test was down by 1% but the oncologist said it would have to get quite bad before they would stop the Herceptin while it is still working.  Obviously not as long on it as you, but definitely a different message.

can you get a second opinion on it?

chrisjonesey
Member

Re: Long term Herceptin

Thanks Dawn, that's very useful. I don't think we have a PALS here though. It has been suggested that I just refuse but as you say 1yr is a long time with SBC. Good luck with your treatment. Chris xx
dawnhc
Member

Re: Long term Herceptin

Chris I was stable on herceptin for 10 years. My heart remained reasonably stable on MUGA scans. If that is  the reason they are giving you then you need to ask why they are saying this. Do you have a PALS in your hospital? If so it might be a good idea to have a chat with them. It is a bit strange that they are talking about 'maybe taking you off it in 12 mths time'. A year is a long time in SBC terms and I think she is a bit naughty to cause you unnecessary anxiety telling you this.

 

In the past year I have been taken off herceptin because they think I have very slow progression with risk that a tumour on my spine could compromise my spinal cord. I have been switched to kadcyla which is part herceptin. It is proving a problem after a year as it is dragging my platelets down and if things don't improve I would have to come off it and would not be allowed to go back to herceptin and that decision is all about funding!

 

Dawn

xx

funnyface
Community Champion

Re: Long term Herceptin

Can you get a second opinion?

chrisjonesey
Member

Long term Herceptin

I have been stable for 9 years on Herceptin after SBC diagnosis in 2006. My Oncologist has said that they are thinking of taking me off Herceptin in 12 months time. Her reasoning is that my other organs, ie heart, is deteriorating, but in 9 years it has hardly deteriorated at all. I can't help but feel that the only reason to do this must be either, money, or, they want to see what happens, ie, turn me into a guinea pig. They said I'm not the only one in this situation. Is there anyone else in this precarious position, would love to hear from you.