Forum Discussion

GalMcB's avatar
GalMcB
Member
5 years ago

Perjeta for early stage HER2+

Hi there,

I'm 35 and recently started neoadjuvant chemotherapy for early stage HER2+ breast cancer (spread to lymph nodes).

My oncologist has mentioned that there is an additional drug called Perjeta that can be taken with Herceptin, however it is not on the PBS for early stage cancer and therefore would have to be self funded.

I'm keen to hear of people's experiences with using Perjeta in this way:
- why you chose to have it or not have it
- how much it ended up costing
- whether private health insurance funded any of it (particularly Bupa)

Thanks in advance!

10 Replies

  • @Fiona2 thank you so much for sharing your story.

    What an amazing result!
  • Hi GalMcB. My story is very similar to that of Sydneygal ie Her2pos, grade3, stage 3 and having the works thrown at me, including the perjeta and after 6 months there was no sign of tumour.  Had minimal surgery but still followed up with radiation and the full year of herceptin.  My oncologist seemed to think that pejeta was an important part of the mix but can you ever possibly tell?  Can say though that it felt amazing and astounding to get such a great result following such a bleak and scary time.  Would be tempted to say I felt 'blessed' except I'm not keen on that concept.  Just very, very lucky to have a great medical team, great available treatments and, oh yes, I beautiful and generous sister who footed the $8,000 bill.  We seem to have the good fortune to have the best treatment options for the Her2 pathology and I wish you the best for your treatment and its outcome.
  • Yes ara, we are in the same boat as I also have 2 young kids.

    Did your oncologist say that you 'need' it as such? Mine doesn't seem convinced that it is required.

    What stage of treatment are you at? I'm into 2 rounds of AC so far.
  • Hi GalMcb,

    Hello and I am sorry to see you in this forum.
    I think we are on the same boat, when my doctor told me that I need to have Perjeta but will need to fork out 10k for it I was hesitant because its a big amount of money. But when you think about it you cant really place money over value of your life. I have 2 kids and I have to make sure that I fight this thing will all I have and all the resources we are presented with. Money you can earn it but once a life is lost its lost forever. All the best.
  • @GalMcB The MRI I had just prior to surgery indicated that the tumour was dead. But you still have to have surgery. They don’t know for sure until the put the tissue under a microscope. I had a partial mastectomy.
  • @Sydneygal that's amazing! So you didn't need to have surgery at all?
  • Hi @GalMcB,

    I had HER2+ cancer stage 2, grade 3 ER+ PR+ and was advised by my oncologist to have perjeta. It was a difficult decision to make because it was about $11,000 out of pocket and I wasn’t given much information as to whether it would be better to have it or not. You can find reports on the PBS website as to why it hasn’t been listed for early breast cancer.

    In the end my mum wanted me to throw everything at the cancer and paid for the perjeta. The combination of AC chemo, taxol, herceptin, perjeta and zoladex worked in my case. By the time I came to surgery there was no cancer left. I had a complete response. During the follow up appointment with my surgeon I did ask him whether the perjeta was worth it and he said yes. But who knows? 

    My health fund didn’t cover it, but you can phone them and find out.
  • Hi @GalMcB

    You are right, I did not have chemo before surgery.  If the oncologist thinks you need Perjeta is there an option to apply under special consideration for you to have it free.  You could ask the Onco.  There might be someone who has had this combination for early stage BC, hopefully they can respond.  What chemo drugs are you having, I had 12 weeks of taxol and now on herceptin till the end of the year.  Good luck with your treatment.
  • Hi PV123,

    Thanks for your response!

    There have been some trials to show that Perjeta has increased effectiveness than Herceptin alone for neoadjuvant chemotherapy (to shrink the tumour prior to surgery).

    I imagine that since you didn't have lymph node involvement you would have gone straight to surgery without chemo?

    My oncologist has mentioned it as an optional extra only.
  • Hi @GalMcB
    i was also diagnosed with early breast cancer which is her2+.  The only difference is that I did not have any lymph node involvement.  I am on herceptin for a year, the oncologist has not suggested perjeta for me so I am unsure of the pros and cons.  Is there any reason that the Onco wants you to have perjeta with herceptin?