Kadcyla

FormerMember
FormerMember
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Hi, this 1st time I’ve messaged, I recently started Kadcyla after mastectomy and incomplete response from neoadjuvant chemo, I was assured the side effects would not be too bad, that other people work happily during this treatment. I was hoping for the same,but feel exhausted and like I’ve had flu for 3 days. Has anyone else had experience of this drug?  I know it was only recently approved by NICE for adjuvant use in early stage her2 positive cancer, so struggling to find anyone in similar boat.

thanks

  • Hi

    Sorry you find yourself here and sorry too that you've not had a reply as yet.  I can't help as I know absolutely nothing about this drug, but as your post has slipped down the page, I thought I'd just 'bump' it up to see if anyone with any knowledge is on the site at the moment to offer any information.  

    Kindest wishes, Lesley

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  • FormerMember
    FormerMember

    Hello beach sea

    I am on Kadcyla (TDM1) for the past 18 months and it has gone really well up until now.  I have been working most of the time but exhaustion is hard.  I job shared for a while, took some extra time off unpaid.

    Get my infusion every 3 weeks and have had 24 treatments so far.  

    I had HER2+ breast cancer which spread to liver.  Had liver resection then started on Kadcyla.

    I too find it difficult to find people on Kadcyla to see how they are getting on.  

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Rainyday1900

    Thanks for your reply, it's reassuring to hear your experience. I had my 2nd cycle last week, been quite nauseous, more than last one, but been assured I will have better anti nausea next time. Not fluey this time though, so swings and roundabouts, maybe my body will get used to it! 

    I am planning on a slow phased return to work, which will be good as I want something else to focus on.

    I can't imagine how exhausted you must be after 24 treatments, I imagine there is an accumulative effect. It is good to hear though that you have been able to work most of the time.

    I hope it continues to keep your cancer in check. 

    Thanks again. 

  • FormerMember
    FormerMember in reply to FormerMember

    The nausea I always have for 3/4 days after treatment but I now get Olanzapine (anti sickness) and it does help.  Had tried a few different ones but this seems to suit me best.

    There are lots of little side effects over time, pins and needles toes and fingers etc.  

    If you need to ask me anything or just vent, I'm here.

    Look after yourself, make sure and have your 3/4 monthly scans and be safe

  • FormerMember
    FormerMember

    Hi I have been having Kadcyla roe two years and have been able to carry on ok the side effects I have is neuropathy of my hands and feet does anyone else suffer with this

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Rainyday1900 i have the same condition as you and have kadcyla every 3 weeks i have had 40+ treatments but have neuropathy in hands and feet do you have any side effects

  • FormerMember
    FormerMember in reply to FormerMember

    Thanks, will do.  I hope if I get the anti nausea sorted that will be a step forward. 

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Donna 777, I've only had a couple of cycles, but have peripheral neuropathy from my neoadjuvant chemo, but seems a little worse. Do you get achy and tired as well? Really good to hear from others taking Kadcyla.

    Take care

    Beach sea. 

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Beach sea good o hear someone else is on Kadcyla i only get a little tired on the day i have it apart from that iam ok its the neuropathy thats my problem but i have found rubbing deep heat cream into my fingers does ease it a little

    you take care and will chat again xx

  • I was offered Kadcyla for early stage her2 positive back in December and after researching side effects and weighing up the pros and cons. I decided not to go down that route and stick with Heception and Perjeta as it suited me with only bouts of continuous diarrhea. The chemo had made me almost contsantly bedridden and with a disabled child to care for I couldnt go through that again.  I found no one that had been given it for early stage so had to make a choice based on the Katharine Study. 

    Emma XXX