Enzalutamide combined with HT

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My brother has now been offered enzalutamide tablets 4 daily along with HT.  He has only started this over the last few days.   Does anyone have any direct experience, advice to offer, side effects, success stories anything really that would give me a balanced view. 

Gleason 9 stage 4 with mets.

Thank you from a very worried sister 

  • Hi, I’m on Decapeptyl implants and 160mg of enzalutamide. PSA down to 0.05. Feeling fatigued, insomnia, slightly anxious but no other side effects. I’m also on bisphosphonates and D3/ calcium which they say makes you feel crap. I’ve been fine so far. Just home from a walk up the front and fish and chips with the grandkids at Prestatyn. Stay positive 

    best wishes to your brother and you. Neil

  • Thank you Neil .... glad you are coping well.  It's not an easy journey 

    Jes

  • Hi Jes

    I have been on Enza for 2 years now, alongside 3 monthly Zoladex implants.  A major side-effect for me is fatigue, and have reduced my work to 4 days per week so I get a bit of extra time over the weekend to re-energise.  I have seen a number of people take about getting very emotional as a side-effect of HT although apart from early days I can't say that has been a big thing for me.  Obviously one very big impact is the lack of libido - that side of life has completely disappeared.

    On the positive side, it has brought my PSA down to immeasurable (happened very quickly for me) which is great news cos you know the little buggers can't do anything!  I have 3 monthly bloods and check-in with oncology/pharamacy - this is all very routine but important to mention any new aches & pains etc.  The longer I'm on the Enzo the more anxious I get at these 3 monthlies as I know at some point it will all become less effective, but there are lots of new treatments around for after so that's good.

    Hopefully your brother will do well on his treatment plan,  Steve

  • Hi

    First don’t worry, enzalutamide is a great medication combined with hormone medication that’s what I’ve been on for about three years plus now. The side effects ( which everyone does not suffer from ) are fatigue, tiredness a bit of a fuzzy head these are my problems hopefully he will by pass these as I take a few other meds as well diabetes etc. 
    But don’t worry, after a handful of weeks you get used to the side effects, just part of what we go through.

    Stay safe

    Joe

  • Thank you Joe.....stay well 

  • Hi Jes, im on monthly hormone injections and enzalutamide, see my profile,  PSA fell from 305 to 0.007 like the others said it causes fatigue and hot flushes but it hasn't stopped my social life, still going to work part time and going on holiday. Been on this treatment for 20 months but bit concerned psa has risen to 0.034 the specialist nurse is not to concerned about it should find out next blood test. Hope everything goes well for your brother.....Ivor. 

  • Thank you too Steve for the reply.  I find myself here most days now seeking information, personal experiences anything that might help.  Thank you again. Stay well 

    Jes

  • Thank you Ivor ... I have suggested that my brother join this group I certainly think he would benefit from shared experiences. You are all very brave. Good luck stay well

    Jes