12 July 2017 at 10:26 am #54939
I have just joined the forum and hope you can help. My dad has NET (primaary lung) and spreading to his liver. He was diagnosed a year ago, since then he has been on Somatostatin injections, in recent scans it showed that he has had some growth in his liver. He is about to start taking Everolimus. Has anyone had this treatment? If so, it would be great to know a bit more about it, in terms of side effects, effectiveness, whilst I know every patient is different it would be great to hear of your experiences.
A worried daughter
Demi13 July 2017 at 10:30 am #54952
Hello Demi, welcome, and first of all, dont believe all you read on this forum, we all re-act differently, I personally have not been put on Everolimus – yet, but many on here are on this and a friend of mine has been on this for quite a long time. The foundation have recently produced a most superb handbook, well worth buying, and if you look at the top, you will see ‘shop’ and it does cover Everolimus amongst all the current treatments available. i assume your dad is being looked after at a net centre. I would also recommend that you send an e mail to [email protected] and I am sure one of them will get back to you shortly, but you could always ring the office, and they will put you in touch – sorry, but i had an eye operation last night, and I am typing this with one eye covered, so plase excuse the typos!! Carole.13 July 2017 at 10:37 am #54953
Thank you so much for all this. He is being looked after at the Royal Free hospital. I will definitely be getting in touch with the nurses.
Thank you again and hope you have a good recovery from your operation.13 July 2017 at 6:01 pm #54961
Welcome to the forum and although I can’t help with Everolimus, I’m pleased to see that your Dad is being looked after at the Royal Free. He’s in a good place there. Carole has already given you some good information and I hope you will find it useful. Don’t hesitate to return to us if you need any help, advice or just a chat.
Jenny17 July 2017 at 7:42 am #54968
as Carole has said, because NET is not just one disease – people will have different treatments and varied experiences. Everolimus is a standard treatment, recently receiving NICE approval for use in certain types of NET. WE do give a brief overview of teh drug in our handbook : page 25/30 Section 3 : https://www.netpatientfoundation.org/wp-content/uploads/NET-Patient-Foundation-Handbook-section-3-Web.pdf
It is sometimes helpful to talk with someone who has received this treatment – and you may well get a reply from one of the guys on here who has had it – or if you visit the facebook page – but I would also suggest having a chat when you’re next at the Free, not just with the fabulous team there – maybe also ask if there’s anyone in clinic also on Everolimus who’d be happy to speak with you.
Just remember people’s experiences vary. . .I know some who have taken it for years and others not so long (for one reason or another)
Happy to chat by phone or email
07557147698 or [email protected]
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