Long term Pertuzamub & Herceptin use post-docetaxel

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Hi,

I'm new to the group although I've lived with stage 4 breast cancer for 10+ years now. I accessed Pertuzamub and Herceptin alongside the Cleopatra phase three trial in 2013 and I have been on it ever since. I'm hoping to make contact with other long term Pertuzamub/Herceptin users to share notes on quality of life and SE's. This targeted treatment has given me 10 precious years with my daughter and I'm worried I might have to stop taking it due to progressive numbness in my feet and legs (currently under neurologist investigation).

Beazles

  • Hi Beazles

    Welcome to the forum. While I haven’t the experience you are looking for I noticed that you haven’t had any answers yet. This reply will move you to the top of the discussion and hopefully someone will be along with an answer for you soon.

    Best wishes.

    Daisy53

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  • Thanks for the bump Daisy53. 
    Maybe there aren’t many long term P/H users out there. I think treatment protocols might have changed since I was put on it. 
    :)

  • Hiya is this now the phesgo injection? Xx

  • I’m on phesgo injection- been on it for 3 years since having docatexel- no side effects apart from some itchy skin now and again . I also have neuropathy in my toes sometimes- do you take anything for this ?

  • My understanding is Yes it is. The injection option hasn't been made available to me in Australia but I think its standard in the UK.

  • My neuropathy is under investigation at the moment. My oncologist dismissed it as being caused by a B12 deficiency that went undetected for a while but its progressing so I'm undergoing tests with the neurologist at the moment. What has your oncologist said? (mine reckons these drugs dont cause neuropothy, even though its's listed on the SE's).

  • My oncologist is not confer seems to dismiss it as long term affect from the docatexel treatment, fortunately it’s not too bad just one foot and more in big toe !

    Glad to hear how long you have been on treatment, my oncologist has also said I could probably have this treatment for at least another 5 years and if any changes there are a lot of other options.