Hello Koncerned

I'm sorry to hear about your husband's recent diagnosis. It understandable that you're feeling overwhelmed by things at the moment. I'm sure you've had a whirlwind of appointments and a lot of information to take on board. 

I think that it's important to remember that whilst a drug manufacturer is legally obligated to list all possible side effects, not everyone who takes that drug will experience every side effect. 

What is important is that your husband talks to his Consultant and the team looking after him about how he is feeling whilst taking the medication. It may be that they are able to adjust things to better suit him if he does struggle or to offer an alternative or other support with managing things. 

I'd also recommend you giving our team of nurses a call to talk things through. I'm sure they will be able to answer some of your questions and offer some support and reassurance. They're available Monday to Friday 9am to 5pm on 0808 800 4040. 

I'm also going to tag in one of our lovely members [@Billygoatt]‍ who has been living with what he calls his uninvited guest for a number of years now (Billy also has prostate cancer that has spread). I'm sure that he will pop by to say hello when he gets chance and share his experiences with you. 

I hope this helps. 

Best wishes, 
Jenn
Cancer Chat moderator

Hi koncerned.

I started on enzalutamide nearly four months ago,and apart of hot flushes, I'm having trouble with My BP its reacting with some other meds I'm on but my PSA is dropping nicely .

I was diagnosed Feb 2016 prostate cancer, gone to lymph nodes spine ribs pelvis and a lung, PSA was 1580 stage 4 T3b N1 M1b .

I started off on hormone therapy injections every three months then chemotherapy , what ever I have just as Jenn says im living with my uninvited guest.

Just carrying on keeping positive and fighting, living my life as normal as possible especially in lockdown .

Cancer can affect everyone around them now just the one with cancer so look after yourself as well take care.

Best wishes.

Billy

P.s if I can help in any way please ask remember im not medically trained just a cancer survivor.

Hi Jenn

Thank you so much for your reply and advise, I will definitely look into contacting the team of nurses x

Thank you x

Hi Billy

How lovely of you to message, Thank you. 
what an interesting and accurate name to give it  'uninvited guest'.  
I really appreciate you taking the time to send us this message.  
So far, only day 2 on the Enzolutamide for my husband Steve,  he says he feels fine physically. It's the mental part he's finding difficult. He says he is now 'Living with cancer' !  
I hope your BP and other meds sort their self out real soon 

thanks again 

xxx

There are quite a few people living with cancer on the forum,we just get on with life,and call it the New normal, .

Just living one day at a time having treatment when neaded .

I usto be working for two years after diagnosis in a metal working shop carrying steel plates and welding,till My darling wife,was diagnosed with Parkinson's and Alzheimer's I'm now her official carer,so still plenty of work to do.

Keeping busy is best and positive thinking and actions.

Billy

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.