Hi Koncerned

I hope your husband is doing okay. You sound like me. My husband reads nothing I read everything. My husband was diagnosed in October 2020 and never had a day's illness either. He doesn't talk about about and no-one outside of her children are allowed to know. Which is tough but I have giot used tomit now  We haven't been told a stage just that it is advanced and in pelvic bones. His treatment sounds almost identical to your husband's.  We started on Biculatamide tablets.  Moved on to Prostap injections 3 monthly, 2nd due  end of this month and on Enzalutamide 4 weeks.  But  he is also going to have 4 weeks of Radiotherapy in May. So far so good. Bloods all good today and PSA down to 2.37.  Lots of good stories out there. Billygoatt is inspiring and 5 years diwn the line. Wishing you both all the best x

Hi sis and koncerned .

I've had My Enzalutamide dose decreased I was on four daily 40 mg tablets down to three ,its made a big difference how I feel in myself "hurrah" but My BP is still low so just taking it carefully nobody knows why it hasn't gone up.but I can manage (getting usto it) . apart from that life is normal,well as normal as possible nowadays, feeling well just lack of energy,I try going to local shops only 1/4mile now and again bit of exercise and fresh air.   Exercise is a good help if he can, remember to keep looking after yourselves.,I had very few side effects apart from hot flushes and BP drop

Take care keep safe.

Billy

Hi sis.

Remember I'm not medically trained.,I should think patients stop on tablets as long as neaded, just as long as no bad side effects, don't know if you have read or was told but Enzalutamide is used for men wanting a sex change so they probably will be on for life , one good thing about being on them I only have to shave once a week now My darling wife hates me being bristly when I kiss her good morning or night.

Take care of yourself remember and keep him doing things to pass the day.makes it alot easier on you both.

Billy

I have now been on enzalutamide for over 5 years after being diagnosed with stage 4 metastatic disease which was in sacral spine,ribs  and lymph glands. Yes there are side effects but not excessively inconvenient so if you are just starting on treatment be cheerful and take a positive attitude to life . Get out there and show the world you are a survivor. Your mental attitude is important and I believe that keeping up a normal life is beneficial to your treatmeant. I am happy to answer any questions. Thank you for reading.

I have now been on enzalutamide for over 5 years after being diagnosed with stage 4 metastatic disease which was in sacral spine,ribs  and lymph glands. Yes there are side effects but not excessively inconvenient so if you are just starting on treatment be cheerful and take a positive attitude to life . Get out there and show the world you are a survivor. Your mental attitude is important and I believe that keeping up a normal life is beneficial to your treatmeant. I am happy to answer any questions. Thank you for reading.

Thank you so much for thinking to post this ! My husband was finally diagnosed last August with metastatic disease secondary to prostate cancer.We are very positive people & I'm a retired healthcare professional .But there is SO much we don't know about the journey we are on !

His loss of sexual function was a blow ,but we are dealing with that just fine.At the moment he is experiencing some slight memory issues,hair loss ,hot flushes & fatigue .These are all very liveable with & not interfering much with our most enjoyable lives .It might seem trivial but in your experience do the hot flushes settle down & does any of the beard & body hair return ?

Also he's had an infusion to help protect his bones but we are not sure should he be taking calcium & other supplements (he'd rather not :) .I know these are questions that could be answered during his monthly hospital appointment.But he doesn't ask & Im not allowed in !!

The hot flushes lessen with time but never go away completely.Body hair will return but takes a while. I take vitaminD3 and eat a lot of cheese as it is important to keep strong bones. Life goes on and should be lived as normally as can be managed. I have memory problems  but I think a memo pad and a pencil could be my next move.

Hello,

After a year on Xtandi I found the hot flushes and fatigue continued but thought of the hot flushes as helpful to keep the heating bills down and keep me warm when out in Winter. Normally nothing to do with the temperature, more to do with if I tried to doing anything with even very little stress.

As far as not being allowed into hospital appointments is that your husband's decision or the hospital. If the hospital then I am sure asking the doctor or specialist nurse at the next appointment should resolve that issue. We have never had a problem as I have always worked on the basis that my diagnosis affects my wife at least as much as myself. So she attends whenever I want her to - other than when I am actually receiving tests etc. If your husband then maybe you could explain that being able to go to appointments might reduce your stress?

Good luck and keep positive.

Hi 

Thanks for that .

Enzalutamide immediately halted the doubling of my PSA level and has, in 3+ months, reduced the PSA from approximately 400 to 5.7! I am feeling MUCH better and functioning MUCH more normally