Hi LadiesHope 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

@"Beryl C." - can you explain what the diaphragm muscle pain is. I get spasm/ache under my right breast (same side as my radiation) and can't work out what its from. It seems to happen when i bend over or put too much pressure on that side - like everything is getting squashed. Someone else suggested it might be scar tissue from the radiation, but who knows!!I have been waiting for the feet pain and so far so good, fingers crossed I avoid that side effect!Thanks, Kari

Hi Kari - there's a very tight feeling just under my ribs. At its worst it seems to 'spasm', very, very painful and the only medication which helps is Voltarin. I'm wondering if mine is a result of 'bracing' myself when I attempt to walk with very painful feet (ongoing for the last five years). Diaphragm started about two years ago and I thought it was too much computer work but I haven't worked for three months and with only about half and hour a day to check messages etc, there has been no change. Pain is still severe although not every day. Weird and baffling to say the least. These strong drugs and treatments must compromise the entire system and having been to a chiropractor, physio and remedial masseur, as well as discussed this with my 'brilliant' breast care physio at the hospital I am coming to the conclusion that there are no answers.I have done some Google searches but read these with a very critical approach. It appears that at times there are no definite or conclusive answers. Regards, Beryl.

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!

Hi Kari. Your story is my story. I originally had eighteen three weekly infusions of Herceptin in 2013 after original diagnosis. Then, when diagnosed with metastatic breast cancer in the spine in April 2016, I've been on Herceptin/Perjeta every three weeks and have been told that this will go on indefinitely. Like you, I do wonder about long term side effects. I have six monthly echocardiograms and so far so good. 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.

Hi Kari, I am not in the same boat - but was thinking maybe the long term ladies don't check the site?? While undergoing treatment I met a few ladies who were long term. As it was the hercepton day when I went in I am guessing they may be same treatment as you. (one definite). The definite one had been doing treatment for 4 years and all good and stable - she actually said to me that the side effects seem to go away after a while. I lost touch when they gave her a superdose so that she could go on holidays. (she changed her cycle). So we had the 4 year lady, another on 7 years, then 8 years and a lovely 84 yr old who was 9 yrs past mets diagnosis. And I remember the lovely lady who recently (past yr?) wrote on here with her 10 year anniversary of mets. She had pics and looked so healthy and happy.

Anyone else on Herceptin & Perjeta indefinately???

15 Replies

nelliejs
Member
8 years ago
The first time round for chemo and Herceptin I didn't have a port. Worst decision I could have made. My poor veins just about collapsed and have never quite recovered.
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.
au0rei
Member
8 years ago

Pamelamary said:

Hi Kari,
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
Pamelamary
Member
8 years ago
Hi Kari,
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
HIT
Member
8 years ago
Hi Kari, I am not in the same boat - but was thinking maybe the long term ladies don't check the site?? While undergoing treatment I met a few ladies who were long term. As it was the hercepton day when I went in I am guessing they may be same treatment as you. (one definite). The definite one had been doing treatment for 4 years and all good and stable - she actually said to me that the side effects seem to go away after a while. I lost touch when they gave her a superdose so that she could go on holidays. (she changed her cycle). So we had the 4 year lady, another on 7 years, then 8 years and a lovely 84 yr old who was 9 yrs past mets diagnosis. And I remember the lovely lady who recently (past yr?) wrote on here with her 10 year anniversary of mets. She had pics and looked so healthy and happy.
nelliejs
Member
8 years ago
Hi Kari. Your story is my story. I originally had eighteen three weekly infusions of Herceptin in 2013 after original diagnosis. Then, when diagnosed with metastatic breast cancer in the spine in April 2016, I've been on Herceptin/Perjeta every three weeks and have been told that this will go on indefinitely. Like you, I do wonder about long term side effects. I have six monthly echocardiograms and so far so good.
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.

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Anyone else on Herceptin & Perjeta indefinately???

15 Replies

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