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User

Posted 25 Feb 2021 at 23:04

Forgot to say Skye28, would be very happy for you to PM me when you have a moment,

Rachel

User

Posted 02 Mar 2021 at 13:28

Originally Posted by: Online Community Member

Forgot to say Skye28, would be very happy for you to PM me when you have a moment,

Rachel

Hi - I have sent PM but not sure if you can see it as a new member?

User

Posted 04 Mar 2021 at 09:43

Hi All,

I thought I would check back in. Husband has been on enzalutamide for over a month now. We are waiting for a very recent blood test result to show whether it has worked on his PSA which was 136. He is stage 4 and its spread to his lymph nodes and bones. Bearing in mind everything he is not doing too badly at all, he has completely changed his diet and is exercising everyday without fail. Still working but from home in a role where you do need to be switched on. I think working is making a real difference to his mental health.

Does anyone know the success rate when a man takes enzalutamide? I believe it works for most men but most men of his age dont have T4 metastatic cancer so stats arent the be all and end all of everything. He could move onto chemo of course but really trying to avoid that. He might need to go onto statins as his blood pressure is high and he has an appt with the Doctor tomorrow.

We are SO looking forward to the end of this lockdown and moving forward. It is so so depressing at present. Would love to think we could have a few holidays over the summer (not UK!)

User

Posted 04 Mar 2021 at 10:13

Hi there,

My partner is about a month ahead of yours. Stage 4 spread to distant lymph nodes below chest. Initial PSA was 177. He started Enzalutamide on Jan 21st and PSA 3 weeks ago was 4.84, so definitely working. Next blood test March 15th so will let you know. Blood pressure rise is i think a fairly common side-effect, unfortunately.

Sounds as though he is doing all the right things re: diet and exercise: that's really impressive. Let us know how he gets on and hope this helps.

User

Posted 08 Mar 2021 at 12:36

Just a quick update. Husband has been on Enza since end of Jan 21. His PSA score was 136. Its now 0.25 which is really really good news.

Could anyone say what the stats are for how long Enza works to surpress the spread of the cancer. He has a T4 diagnosis with a Gleason score of 9.

User

Posted 08 Mar 2021 at 12:44

It doesn't work like that Corrie - there are no stats. Usually, enza is given to a man once his hormone treatment has failed and the research data suggests that on average it gives a man who is castrate resistant an extra 12 months (although the range was 3 months to many years). There is no data for your situation as it is a new strategy introduced since the pandemic struck.

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

User

Posted 08 Mar 2021 at 13:55

Thank you. I thought that might be the case. He has I guess done it a different way round to normal due to Covid. He is having little side effects but something is working.

I notice on this forum as well that some people dont want a prognosis or stats. It is what is is and as it affects us all differently stats can be meaningless.

User

Posted 13 Mar 2021 at 00:27

Dear Rachel

i only joined this page today and absolutely understand how you feel. My darling husband got diagnosed three weeks ago with a PSA of 3500 he has bone metastasis and lymph nodes and god knows what else. We have been called tonight they are arranging a blood transfusion for him after the weekend. I am trying to be positive and strong for the kids and him but inside I have fallen apart I’m scared to close my eyes at night for the three hours that I sleep and I long for the bird song so I can get up but it’s only to face another day. I cry for my old life and I honestly don’t know where it is all going to end I have dark moments like you. But we are in it now and there’s no going forward. Keep your chin up you aren’t alone x

User

Posted 13 Mar 2021 at 13:20

Dear Jess,

I so feel for you, those first few weeks are incredibly hard. It does get better, I promise. We have both had days/nights of crying and endless worry about what the future holds, but now that the treatment seems to be working (He's on hormone injections and Enzalutamide), we are feeling more positive and trying to enjoy whatever time we have. I refuse to give up hope that he will keep going for many years. Things are changing all the time with new treatments. It has changed our lives irrevocably but he's still here and I am appreciating every moment far more than I ever did before. This site is invaluable for info about treatments or just a place to be honest about your feelings.

Take care and I really hope the blood transfusion goes well and that things improve - keep us posted

Rachel x

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