Anyone else on Herceptin & Perjeta indefinately???

Hi Ladies
Hope everyone is doing well, it has been ages since I last visited. I was wondering if there are many out there who are undergoing herceptin and perjeta treatment every 3 weeks with no end date like myself. I have now been doing it since about April 2016 and while my side effects are fairly minimal; I have started thinking about what I might expect if things continue the same. I imagine the build up in my system will increase the side effects, so far my heart function is fine....but wonder if it will stay that way. Most people I have talked with only stay on this treatment for the 12months, but as mine travelled into my spine the oncologist says this treatment will remain as it appears I am "responding to treatment".
Thanks, Kari
Hope everyone is doing well, it has been ages since I last visited. I was wondering if there are many out there who are undergoing herceptin and perjeta treatment every 3 weeks with no end date like myself. I have now been doing it since about April 2016 and while my side effects are fairly minimal; I have started thinking about what I might expect if things continue the same. I imagine the build up in my system will increase the side effects, so far my heart function is fine....but wonder if it will stay that way. Most people I have talked with only stay on this treatment for the 12months, but as mine travelled into my spine the oncologist says this treatment will remain as it appears I am "responding to treatment".
Thanks, Kari
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This combo of drugs is seen as being the 'youbeaut' treatment for HER2 positive cancer so I guess you have to weigh up the pros and cons and hope for the best. To be honest, I feel the same about the other medication I'm on - Xgeva and Letrozole. On the one hand, you're trying to extend your life as much as possible but then you wonder if your treatment will one day cause another problem that you have to deal with.
Good luck with your treatment.
I have been on Herceptin for 5 1/2 years and have very few side effects. Not on Perjeta as it wasn't available then and now don't feel the need to change when all is stable. I know of women who have been on it for over 10 years - it really is the wonder drug for Her2+.
Regards... Pam
Hi ladies, wow I never knew Herceptin can be prescribed indefinitely. I am on it for 18 rounds and I have finished the 11th round. So do you ladies all have a port for the infusions? I am getting really annoyed with the port (it's bulging out so much and the stitches under my skin can prick me) I am very skinny! I can't imagine having the port for much longer. So this thread gave me a shock when I read about long term use of Herceptin.
Having said this I am counting my blessings that we have this amazing antibody to use for our cancer. And a port definitely beats having pokes in the veins every three weeks! xxx
This time round had a port put in and it is much better. I'm never even aware of it and it makes access to veins so much easier.
I'm also on the herceptin/perjeta combo every 3 weeks indefinitely, though have only been on it about the same length of time as you.
So far all is going well, with minimal side effects. I have noticed that my nails are really thin and break very easily, despite being more than 12 months post chemo. I also get itchy forearms and neck, but a daily claratyne tends to keep that in check.
As annoying as these things are, they seem pretty insignificant when compared to all the good that these wonder drugs are doing!
Take care,
Jen x
I have been waiting for the feet pain and so far so good, fingers crossed I avoid that side effect!
Thanks, Kari
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!