Is anyone taking Alpelisib/Piqray in Australia?

[NewZealander]

I have the PIK3CA mutation and have recently started taking Alpelisib. I’d love to hear from anyone else living in Australia who is also on this drug. Thanks so much!

[stardust1965]

I think there are only a handful of antipodeans on here so you might want to ask more broadly, if it would help. I don’t have any experience of this drug to comment but I hope the new treatment is helping you.

[NewZealander in reply to stardust1965]

Thanks so much for your response. The new drug has shown great promise internationally however I’m having trouble tolerating it at the moment. I’ve been hospitalised twice with fevers and all over body rash so we are currently experimenting with lower doses. Fingers crossed.

[stardust1965 in reply to NewZealander]

I am really sorry to hear this. I hope you have better results with the lower dose. I have my fingers crossed for you too.

[FeeBeeB]

Hi,I’m not in Oz but on the other side of the world. I will start taking this drug at the end of this week. I have been flying through lines of treatment and my cancer carries a strong expression of this mutation so I am more than keen to find out if this drug will stop progression. Are you taking Fulvestrant alongside the alpelisib?

Fi.

[NewZealander in reply to FeeBeeB]

Hi, thanks for your reply. Yes, I am having Fulvestrant injections. I started Alpelisib at 300mg but was hospitalised with a fever and all over body rash on day 11. When the rash resolved I started again at 150mg but again I was hospitalised within 8 hours after only one tablet, with a fever of 39.5 and the rash reappearing. We are now awaiting a delivery from Canada of 50mg so that we can start very low and gradually increase. Don’t be put off by my experience though, so many others are having great results with no rash, everyone is different. I am really positive about this drug and want to continue.

[FeeBeeB in reply to NewZealander]

Oh no! What a terrible experience! I have read about women experiencing horrible rashes. I did ask my team if I should be taking an antihistamine alongside alpelisib but was told no. They’ll deal with side effects as and when they arise. Hope the lower dose from Canada arrives quickly and it’s plain sailing from here on in.

Every best wish,

Fi.

[NewZealander in reply to FeeBeeB]

I do hope you have fewer reactions than me Fi. I am on a Facebook Support Group for those with the PIK3CA mutation and it’s very helpful. It seems that most of those who are taking Alpelisib take Claratyne in the morning and Zyrtec in the evenings. They start Claratyne a few days before starting Alpelisib to reduce the risk of the rash. You might want to join the group - facebook.com/groups/1699418116870066. They have a helpful FAQ page too. I wish you all the best, Jan

[FeeBeeB in reply to NewZealander]

Thanks for the tip, Jan. I am not a member of Facebook but will rethink joining. I am a bit of a Luddite!

Best wishes,

Fi.