Anyone else on Herceptin & Perjeta indefinately???

I have been on both Herceptin and Perjeta since November 2016. I recently wrote to the CEO of BNCA to see if there was someone I could contact regarding the rule of no longer than 6 week break. I have been told by my oncologist if I were to stop for longer than 6 weeks I could not go back on this treatment. I started having a decrease in the function on my heart and the Doctor thought he may have to stop it. So it prompted me to investigate this. It would be nice if a break could be had with the chance of returning to the treatment if needed in the future. Has anyone stopped or had a "treatment holiday' from this drug?

I also get spasms in my chest from moving the wrong way or stretching to far, I was told it was from the radiation treatment

I also get the pain spasms in my chest. I finished Herceptin five months ago. Mine was believed to be from the surgery due to the position they put you in. I have been having osteo treatment for this and it is heaps better than eighteen months ago.

Hello,

I am on both 'indefinitely', started in 2018.

I've been told that I can have a six week break if I want to go on a holiday or some such thing....

I was also told that Herceptin is fully funded by the PBS and you can stop and start it as needed...however Perjeta is only funded once...once you are on it, you can stay on it as long as you like, but you only get one crack at it (can't stop and start like Herceptin)... Hope that makes sense ;) 

My oncologist says that the company that manufactures it, has a compassionate access scheme where they have provided it to women who stopped for whatever reason, but needed to start it again...but there are no guarantees that the scheme would continue into the future, or that they would extend it to me should I decide to stop at any point in the future...
So I think if its working, people tend to stay on it....indefinitely...

He also mentioned something about the lack of studies regarding what happens to people once they stop...another argument for the 'if its working stick with it' thing I guess....

(oh, and my cancer was in my liver...but the combination treatment seems to have shrunk it to nothing...last CT showed 'nothing of significance'). 

I often find it hard to wrap my head around the fact that I may be doing this for the rest of my life, however long that may be...its quite strange...

Best Wishes!

I am on both ‘indefinitely’ since July 2015. The six week rule is a PBS rule, so maybe ring Medicare PBS area. I have had a 6 week break from both, but not longer. It’s a pain, but it sure beats the alternative. All the best.