Osimertinib

Hi Harriet,

It’s Megan here from Macmillan’s Online Community team. I saw your post and wanted to offer some support whilst you are waiting for other group members to reply.

With you having questions about Osimertinib side effects, you may wish to chat with our nurses here at Macmillan. They can provide trusted information and reassurance, alongside talking through your concerns.

To get in touch with the Nurses, you can post a question in our Ask an expert section on the Community or contact the Macmillan Support Line.

The Support Line is open from 8am to 8pm every day and to get in touch, please call 0808 808 00 00. There is also the option to send an email or use live webchat during the opening hours.

When you get in touch with the Support Line there will be options to speak to the Information Nurse Specialists and Support Advisers alongside the Money and Work teams. If you need a listening ear, the teams can provide emotional support as sometimes it can be helpful to talk to someone who is there to listen.

I’m sure others who feel comfortable sharing their personal experiences with managing Osimertinib side effects will reply soon. In the meantime, I hope the above information can be useful.

If you have any questions about the above, or ever need any additional support, please don’t hesitate to get back in touch. You can email community@macmillan.org.uk or send a private message to the Moderator account.

Hi Harriet,

I think everybody is different. Sorry if that is not much help. 

One thing I was told, and follow, was to drink loads both during chemo and now on Osi. The liver and kidneys take a beating with all this muck, So keep them hydrated. Good luck.

Hi harriet

My mum has been on it 6 weeks now and we are waiting on first scan results.   My mum has been ok on it but has lack of appetite and she has lost weight so we are hopefully going get that sorted.   They do say to keep your skin well moisturised as this drug as it can cause a lot of skin problems.  

Thanks Chas I’ve been on it for a week today and my mouth has broken out in ulcers - thanks for your reply

Thanks Binijac hope your Mums appetite returns soon