What will come after perjeta and hercpetin?

Dear everyone,

                             I was just wondering if any of you have had any discussions with your oncologists about what would happen if perjeta and herceptin stopped working for you?  I am currently maintaining on these drugs plus having denosumab and tamoxifen.  Fortunately, I have been stable for the last 2 scans.  Hopefully,  they may work for awhile.  I must say my team don’t say much to me about this being the case.  I know that Elliedog,  who is on the same treatment,  appears to get quite positive encouragement from her oncologists about being on these for a while.  I know I should try not to worry about things until they happen but I was rather surprised when I asked my oncologist what would happen if I progressed.  He said that the herceptin and perjeta would be stopped as there is only funding until progression.  I was a bit shocked about this as my breast cancer nurse had said that if I progressed I would go back on chemo.  I had thought that meant that chemo would be added in again to the herceptin and perjeta.  I realise that if the drugs aren’t working as well is there any point in staying on them!  It is just from US sites they seem to add in chemos and seem to recommend staying on a her2 drug.  He did mention that we could use tykerb which I know is a her2 drug plus there seems to be good news regarding TDM1.  I suppose I would just like to think there are loads of treatment options out there.

 

I would just appreciate anyone’s feedback on this.  I would just like to say how useful I find reading the forum and how I appreciate people’s posts and the way everyone is so supportive of each other!  

 

Hopefully,  you aren’t all suffering too much with this dreadful weather. 

 

Sue xx

Hi I cannot answer your question fully as I have only just started herceptin and perjeta and taxol and it appears to be working for me and just got to hope it continues!

I have been on herceptin for three years since I was first diagnosed and have had progression just on herceptin and my oncologist still kept me on it as even though I had progression the herceptin was more than likely slowing things down. He added tykerb to it as well which didn’t stop progression but it did slow it down.

Hope this helps.

Charlotte

hi Sue. The info the onc gave me was that as long as I am responding to treatment then I will stay on the Pertuzumab and Herceptin and Tamoxifen.If things change then the funding for Pertuzumab will be taken away. However I am only down to see him once a year now and am scanned 6 monthly. He is very up beat about Herceptin alone and thinks adding Pertuzumab is double whammy. My last scan was clear and i am hoping my next scan will be the same. He does suspect that there are ladies that already have secondary at the time of their primary dx but chemo deals with it and they go on to live without treatment. However there are those like me where its found by accident and treatment continues, but I could of been one of those ladies he talks about, but I think I would prefer to take the treatment for now just to make sure. He did say that if the treatment stops working then there are the options of other drugs such as TDM1. He also reminded me that he has ladies ten years down the line still on Herceptin alone and doing well. I checked this out with the nurse to make sure he just wasnt making me feel better and she said YES they do have ladies doing very well on Herceptin and they have also had ladies that have chosen to come of Herceptin with no re occurance. So yes I have a very positive medical team and I hope I will be one of those ten year ladies and more.xx

Hi sue
I was diagnosed with liver mets last year
I was on docetaxel chemo and herceptin i still continue on herceptin.
My onc has not given me a prognosis but she is really pleased with how im responding to herceptin.
My liver mets are still shrinking and the only thing discussed ismy last 3 month scan the fpund abnormalities in chest and arm onc said so tiny she not concerned but if get bigger grow she will add something with herceptin.
Its tuff i feel the same i done my own research on drugs available for her2 but it would help to hear from the horses mouth but same time scary to think the herceptin may stop working.
The only other discussion with my onc was the syart of herceptin she said that she gonna try it and that she has plenty up her sleeve if it stops working.
But i agree its lovely to hear positive stories and there is so much research continuing every day we are a step closer to better drugs and this cure
Connie

Thank you sue
Keep me posted with your progress
And take care
I do hope so too :slight_smile:
Xxxx