Hello Michelle,

Welcome to our forum!

While waiting for others to come along and share their experience of this drug with you, I thought I would share some information we have on our site on Enzalutamide with you. You can read more about it here.

Feel free also to ring our nurses on 0808 800 4040 Monday to Friday 9am to 5pm (it's a free number from UK landlines) as they may have some useful advice for you.

Best wishes,

Lucie, Cancer Chat Moderator

Hello, I know this was a long time ago now but my father is in the same position and I was wondering if your dad took the medication and if he did was he ok?,

My husband has been on Enzalutamide four tablets a day for over two years now. it does cause fatigue and he does feel tired but has learnt to cope with this and his PSA is so low around 0.7 he has regular checks with the oncologist to check he is tolerating it oK and has to take alderonic acid to protect his bones but overall it has been very sucessful. To begin with he felt a bit dizzy and was very fatigued but he perservered and got used to it.

Hi there. I may be able to help here. I'm 68 and just over a year ago developed pains in my neck and later headaches associated with it. Several wrong diagnoses later things got really bad - terrible neck and back pains one really bad headaches. Eventually I was diagnosed with stage 4 prostate cancer. At that point it's fair to say I was dying. I was offered chemo or Enzalutimide and chose the latter which I was told would be less awful than chemo. Since Monember 2021 I've been onn3 monthly Zoladex implants and Enzalutimide, 4 tablets a day. My PSA has come down from 500 to 0.1. How long that will last I don't know. The next step if/when it starts rising again will be chemo. 

Essentiasly the cancers, which have spread everywhere, have now shrunk and are no longer spreading. What I am left with is bones, particularly in my spine and hip region, that have got holes in, a bit like Swiss cheese. They are, apparently, trying to repair themselves but they are significantly weakened and I face the risk of osteoporosis from the cancer, the treatment and general old age. 
 

Not a happy tale and from day to day I suffer neck and back pains which respond reasonably to painkillers like codeine. 
 

it's all been life changing but I can carry on. Without Enzalutimide I might not be here now so I'm profoundly grateful. I haven't suffered much in the way of side effects. Hot flushes from time to time, lack of motivation perhaps, and certain private parts of my body have shrunk though I guess by my age they have already served their purpose. 
 

so I would say take it if it's offered. It's nothing to be too scared of and it's better than the alternatives. 

Hi

My dad has just been offered Enzalutamide as a treatment for prostate cancer which he has had for 7 years now but has recently been found to have spread in his bones. Our main concern is the neurological side effects which are mentioned . Memory problems, seizures halucinations and restless legs . Dad would be willing to try the Enzalutamide but is concerned that if he does develop any of these side effects would they be reversible if he then came off the drug . Has anyone suffered any of these side effects and then stopped taking Enzalutamide and what were their expirences of this.

Many Thanks

Hi I started on Enzalutamide too years ago after my PSA went up to 68 .in three months .  i was originally diagnosed at over 1500 ,had hormone therapy then chemotherapy (February 2016) it'd gone to lymph nodes spine ribs pelvis and a lung .in two years it dropped to 0.06 then slowly rose up over the years then jumped up to 68 .it dropped slowly to 0.03 last year i did struggle lack of energy memory movements. i was originally on 160 mg it was dropped to 120 then 6months later 80:i started improving moving about and energy my PSA is rising very slowly now but I'm feeling alot better, still have bad days but im determined to keep going .i do jigsaws and read plenty to keep my mind active .i was 64 when diagnosed,70 now i was looking forward to retirement . usto drive haven't for years as concentration not very good . Good luck with whatever happens with your father .

Billy

PS i was told my blood pressure would go up instead it dropped low which didn't help energy I bought a blood pressure monitor, not to expensive . Having to have a blood test before I can order tablets from hospital and they are delivered, not on usual dr's prescription .

Hi,

 Brief background.

Aged 65 I was diagnosed with advanced prostate cancer almost 7 years ago - PSA of 130, spread to shoulder blade and sacra iliac. Was put on a course of docataxyl which stemmed any cancer spread and reduced the PSA to 1.0. 
In December 2017 PSA started to rise (9.0) and I was put onto Enzalutimide (4x40mg daily) and have been in them ever since. Since then the PSA has kept at below 0.1. (Currently 0.029). The only side effects I have experienced are occasional tiredness - but not enough for me to say it's a problem - and restless legs, again not a major issue. From my experience, and I appreciate we're all different, I'm delighted with the results so far - four and a half years and counting!

Hi

Sorry for the late response I did find your post helpful. Dad has been started on the Enzalutamide . Unfortunately after the first two weeks his bloods showed his Bilirubin was high and he had a UTI so has been on antibiotics . He was therefore taken of it for 10 days to complete the antibiotics and is due to restart tomorrow . Fingers crossed will be able to continue . 

Hi 

This sounds very positive. As you will see from my previous response Dad hasn’t had the best start but we remain hopeful