Lyn Eyre advice requested Apalutamide

User

Posted 11 Sep 2021 at 16:59

Hi Lyn,

Me again. Am seeking advise from you please and any other expertise in our community against changing meds scene.Profile up to date due to start cabz cycles on Wednesday.However on Friday seen press release that Nice has approved the above new drug for 8000 APC UK suffers.Having done some quick reading on internet it's a 4 tablet a day tablet regime .It's supposed to give greater anti tumor activity at lower dose than Enza and lower concentrations in nervous system and be less toxic than chemo.Seems no brainer to leave cabz for later and give this new stuff a go unless am unsuitable for some good reason.Going to raise with doc on Monday.May not be well received as medical team monitoring me probably come up with present plan based on NHS policy before this announcement.What rights do I have to invite them to revisit chemo. decision as this stuff now approved please?Don't want to have less than optimal care if facts change got to look at it again surly? Again your urgent advice appreciated and will keep community updated as this new very expensive drug could buy us more time and quality of life.

Regards

Norm

Edited by member 12 Sep 2021 at 06:36 | Reason: Typos

User

Posted 12 Sep 2021 at 18:00

Hi Norman,

Just a quick query before Lyn checks in.

I missed that press announcement you mention: can you tell me more about it? My oncologist says my Enzalutimide is "well tolerated" but it would be useful to have possible alternatives.

James

Edited by member 12 Sep 2021 at 18:00 | Reason: Typo

User

Posted 12 Sep 2021 at 22:39

Hi Norman, no harm asking but I don't think you fall into either of the suitability groups - hormone dependant with mets and hormone independent without mets. You are hormone independent with mets :-(

Edited by member 13 Sep 2021 at 00:14 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 12 Sep 2021 at 22:41

Hi James, it is easy to google - just search for Apalutimide NICE Sep 2021.

I don't think it is going to be available to men who have already had enzalutimide or abiraterone.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 13 Sep 2021 at 03:26

Hi Lyn,

As always many thanks for your speedy advice on this.Its great to get inputs laypeople can understand.This disease is a many headed complex beast that's difficult to try and understand let alone live with!

Incidentally I see you have made over 12000 posts on this site Lyn.Its great that you are prepared to put in all the research time ( and typing ! ) this has involved.You have provided much reassurance to me and many thousands of others about what's happening to us.

Kind Regards

Norm

Edited by member 13 Sep 2021 at 04:46 | Reason: Not specified

User

Posted 13 Sep 2021 at 10:15

I have found the article but has the draft NICE recommendations been published? Am I correct in saying this is to be given alongside ADT?

User

Posted 13 Sep 2021 at 10:34

Documents can be found here. I have not had time to read them fully. The anticipated date for turning this draft in to the final guidance is 28 October.

https://www.nice.org.uk/guidance/indevelopment/gid-ta10423/documents

Dave

User

Posted 29 Sep 2021 at 15:06

Been on Apalutamide since Dec 20 after being diagnosed on Oct 20. PSA383 and gleason 9. Had R/T in Feb.

So far it seems to be working with PSA at untraceable levels on my last two check up with no side effects.

As someone else mentioned, its a disease with many heads and you do wonder at times what the right treatment is.

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