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Anyone else on Herceptin & Perjeta indefinately???

Kari_2015Kari_2015 Townsville, QueenslandMember Posts: 107
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


  • nelliejsnelliejs BrisbaneMember Posts: 20
    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. 
  • HITHIT Perth WAMember Posts: 261
    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.  
  • PamelamaryPamelamary Member Posts: 240
    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
  • au0reiau0rei Member Posts: 216
    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
  • nelliejsnelliejs BrisbaneMember Posts: 20
    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.
  • JenoBJenoB Member Posts: 11
    Hi Kari
    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
  • Kari_2015Kari_2015 Townsville, QueenslandMember Posts: 107
    Thanks ladies, yes it is terrific that this is available to us and every time a nail breaks or tears, I remind myself how lucky I am!   @au0rei - I don't have trouble with the port - I am definitely not skinny enough LOL  But in saying that it does annoy me off and on, but not enough to not want it.
  • Beryl C.Beryl C. Member Posts: 270
    Hello - I had my first Herceptin infusion July 2011 and last week had No. 78. HER + and metastatic, left breast masectomy and removal of lymph nodes Dec. 2011. Developed excruciatingly tender feet in Aug. 2012 - all manner of tests reveal no physical cause. Its either Herceptin or Anastrozole. Voltaren seems to ease the pain and these last few months I have decided to use a walker, pleased about my decision as it allows for greater mobility and independence. In the last year the problem also includes my diaphragm muscle - I've tried massage, chiropractic, water exercise, heat etc all of which make little difference to the occurrance of painful spasms. My oncologist says I am doing well and that he will continue Herceptin for as long as my heart stays healthy. I know that my level of physical fitness is limited, I'm know considering weights, years ago this was part of my fitness workout and I enjoyed it. Baked Bean tins in a stocking? Hmmm...... I will continue with these drugs, my quality of life has changed and the adjustment is not always easy. I am daily grateful that I decided to be a public patient and that Herceptin is on the PBS. Beryl

  • Kari_2015Kari_2015 Townsville, QueenslandMember Posts: 107
    @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
  • Beryl C.Beryl C. Member Posts: 270
    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.
  • CcazaCcaza Member Posts: 2 New Member
    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?
  • CcazaCcaza Member Posts: 2 New Member
    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
  • Blossom1961Blossom1961 Regional VictoriaMember Posts: 2,012
    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.

  • mtansyzmtansyz Member Posts: 10

    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!
  • StarGirlStarGirl Member Posts: 128
    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. 
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