Is anyone taking Apelisib?

  • 6 replies
  • 32 subscribers

I was on Paclitaxel but had to discontinue because of side effects. I wondered if anyone has experience of taking Apelisib. 

  • Hi  

    I'm sorry to read that you had to stop paclitaxel because of side effects but it's good that your team have another drug for you.

    I've searched the group for previous posts which mention apelisib but drawn a blank I'm afraid. Of course this doesn't mean that no one else is on it, it could just be that they haven't posted about it yet.

    It would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

    I hope you get on well with apelisib.

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  • Probably not that many people with metastatic breast cancer taking Apelisib (Piqray) in the UK at the moment unless they were on a trial or newly diagnosed.

    Its use is restricted to people who have not received Fulvestrant previously, which means that many people who started their treatment using the Ribociclib/Fulvestrant protocol won't be entitled to receive Alpelisib.

    And unfortunately, its maker Novartis, are not agreeing to supply it on compassionate grounds in the UK. 

  • I took Alpelisib for 5 weeks. Had bad side effects which affected my kidneys. However it had a dramatic effect my markers dropped significantly and most of liver lesions were not visible on scan. 
    I started again on lower dose but had an allergic reaction so that was that. Nevertheless it has given me a window to take a break and I am now trying Capecitabine for the second time as I came off that for a liver resection. 
    Wishing you all the best.
    Marie xx

  • Thank you Marie. Alpelisib seems to work for some and not for others. I've been on it since March, had a break because of diarrhoea and am back on it now. Most of the time I feel well. I've joined the Facebook group in the US. It's been very helpful. Good luck with Capecitabine. It's the next line of treatment for me.

  • Ditto I found FB very helpful. Mxx

  • Thanks for the reply Marie and good luck with the Capecitabine