Anyone on pertuzamab ?

FormerMember
FormerMember
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Hi I've been on pertuzamab and herceptin for five and a half years now since my third recurrence of secondary breast cancer. It's keeping me alive and I'm very stable but as far as I know this drug was very new when I went on it and no one I know has been on it for the same sort of time as me. My question is , has anyone started to have numbness in their feet and the feeling of walking on pebbles? Has anyone got other side effects? I'm on this drug for the long haul so interested to know what may lie ahead. Thanks Kim.

  • hi Kim  

    nice to hear it's still working for you but I can't help with the side effects, I only had Herceptin for the year after chemo. 

    I didn't think I had any side effects from the Herceptin until someone mentioned 'low mood' and I had realised I could have felt a bit happier but then there was lots going on, it wasn't a major issue but perhaps it would have been nice to chat to someone about it. 

    I still struggle with low vitamin levels generally and have just discovered oat milk, hoping that helps, although I think they add the vitamin D

    as for walking on pebbles, have you tried memory foam insoles ?   Let's hope it doesn't get too annoying. 

    hugs

    Carolyn

    xxx

     real life success stories to remind you that people do survive breast cancer

    https://community.macmillan.org.uk/cancer_types/breast-cancer/f/38/t/115457

    Dr Peter Harvey

    https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

     

  • FormerMember
    FormerMember in reply to Carolyn28

    Thank you Carolyn, I can't seem to find anyone who's on Pertuzamab. I know it's a funded drug and not always available but I'm sure there must be people like me out there. I'll just have to see what side effects appear as they obviously have no data on it yet. Thanks again. Sounds like you are doing well, keep that way. Kim xxx

  • Hiya Kim /  

    Most of those who are having Pertuzumab are having it with Herceptin for treating HER2+ Positive breast cancer in the Main Breast Group - Having said that it is only for a year, so not as long as you have been on it.

    Have you asked if this weird feet numbness sensation could be a sign of Peripheral Neuropathy ?

    Hugs, G n' J

  • FormerMember
    FormerMember in reply to Dreamthief

    Hi, thank you. Yes I think it's definately neuropathy, it's more about finding people who have been on the drug for as long as me to see if any new side effects are on the horizon . This drug was only approved 2012/2013 and I started it early 2014 but don't know anyone else who is still on it and surviving . Thanks again. Kim xxx

  • Hi Kim 

    That is certainly a fair time to be having it for - J was treated for HER2+ BC in 2012 and finished her Herceptin a couple of months before Pertuzumab was given the 'green light' by NICE, so just missed out on that one...

    Have to see the silver lining in your "don't know anyone who is still on it and surviving" comment Thumbsup

    Going off on a tangent, have you had a diabetes test recently ? As that can affect the feet...

    Take care, G n' J

  • hi Kim   

    thanks, I'm trying to put it all behind me but I actually feel better sometimes popping on here and having a chat about stuff. 

    Perhaps it's because I had all that crap with the surgeon missing the tumour and the misread scans, it's never enough to hear 'clear'.

    That and the fact my mother and father died at 60 and 61 and I'm edging ever closer to that milestone. 

    Did you get involved in the Kadcyla debate back in 2016 ?

    hugs

    Carolyn

    xxx

     real life success stories to remind you that people do survive breast cancer

    https://community.macmillan.org.uk/cancer_types/breast-cancer/f/38/t/115457

    Dr Peter Harvey

    https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

     

  • FormerMember
    FormerMember in reply to Dreamthief

    I will be starting Chemo in 7-10 days 

    Doxetaxel,Perjecta,and Herceptin

    will come back with what happens?

    Love  

  • FormerMember
    FormerMember in reply to FormerMember

    Hi all,

    I am waiting for Pet Scan results but the plan at this time is to have Chemo first,it was surgery  but that was cancelled and Chemo was the first treatment  to be started

    I am waiting for the results of the Pet Scan..However the plan is Neoadjuvant Chemotherapy ,Doxetaxel,Perjeta and Herceptin.

    I was told before pertuzumab,trastuzumab Herceptin and Doxetaxel.

    Are these the same as above?

    any one knows please reply,  than you all,

  • FormerMember
    FormerMember in reply to FormerMember

    Yes they are the same xxx

  • FormerMember
    FormerMember in reply to FormerMember

    Pertuzumab and perjeta are the same