Treatment experiences with Enzalutamide

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Hi all,

My husband has his appointment today with oncology. The cancer has spread within his bones as 'lesions' and to the lymph nodes just around the prostate. They have suggested taking Enzalutamide as well as the digarelix injections, radiotherapy on the prostate as its large and causing slight compression on the left kidney. Chemo maybe further down the line. They won't give a prognosis depends on how well treatment works. Has anyone taken Enzalutamide and was it any good please? Thank you all 

  • Hi Enya52.

    I do hope that your husbands appointment goes well this afternoon with oncology??

    I have been on Hormone Therapy injections and tablets since last June 2023 and my PSA has come down from 1000+ to 0.9 currently.

    My cancer has also spread to my bones and my prostate is also pressing on the left side of my bladder.

    This isn't causing many problems as I have got a Super Pubic Catheter so the bladder doesn't really do much nowadays.

    I have been taking Apalutamide Tablets and Prostrap injections as part of my HT from day one which have worked very very well.

    I do hope other members will be in touch soon with their experiences with your husband's current HT meds.

    Please please let me know if there is anything else that I can help you with??

    Prostate Worrier.

  • Hello Enya

    My husband has not taken enzalutamide so I am really sorry I can't give you any details. But, I just wanted to wish you and husband all the very best with any of the treatment options you are offered. xx

  • Did they give you a prognosis? They wouldn't with my husband, as they said they didn't know! He's been on Digarelix for 5 weeks and his psa hasn't changed but they said they were not worried as sometimes it takes time to drop. 

  • Hi Enya52.

    Many thanks, yes they gave me a prognosis of "Treatable not Currable" at the first appointment with the consultant.

    He has been correct to date as the PSA has dropped considerably.

    Yes if his team thinks that the PSA isn't a problem then I shouldn't worry as we are all in their hands at the end of the day.

    Prostate Worrier.

  • Hi Enya52

    My husband is taking Enzalutamide since January this year. This in addition to Zoladex injections every 3 months. He has just finished a course of RT to the prostate. All the details on the profile.

    Emzalutamide is what they call 2nd generation hormone treatment. Few years ago it was  unavailable on the NHS as it was so costly but it is now on the NHS. My husband react well to the treatment so far and his PSA is dropping. His next PSA is next Tuesday so fingers cross. His diagnosis is similar to your husband with bones and nodes spread in the pelvic area.

    I can only add that the side effects are tolerable and life almost normal. We are positive, optimistic and fighting this bastard together.

    Best wishes

    Dafna

  • There was a question about the side-effects comparison between being on Lupron + Abiraterone vs being on Orgovix + Enzalutamide.

    The answers were pretty much split in the middle where some people had a easier time with Enzalutamide and some had a worse time. 

    In my curative intent treatment, I was on Lupron + Abiraterone. Then I had a 13 months vacation from ADT. I've begun on Orgovix last week and will be adding Enzalutamide at the end of June after my next blood test. This little delay before taking Enzalutamide is just so we can separate how I do on Orgovix before doing the combo Orgovix+Enzalutamide.

    But even if I was already on Enzalutamide and told you how I felt, it does not mean that it would be the same for your husband. We're all different in how we individually react to different drugs. I can only wish you and your husband the best and hope that he will be amongst those who react well to it. 

  • Hi Enya

    Sorry a bit late on answering your query,  I only log in a few time a month.

    We all react differently to the treatments we are offered.  I personally has 2.5 yrs on enzalutamide and had almost no side effects from the treatment which worked really well in reducing psa to single figures. I was able to continue living an active lifestyle during this time.

    Regards 

  • Hello Enya52,
    I was diagnosed in March 2021. After numerous scans, they told me it was an aggressive and advanced prostate cancer. It was already at Grade 4, Gleason 9 and in Jun 21 they told me it was “treatable but incurable” and gave me a prognosis of “2yrs, maybe 3 but not 5” so I am over the 3yr point currently.

    I have been on daily Enzalutamide for over 3 years with 3 monthly injections of Decapeptyl. It has dropped my PSA to less than 0.1 so it is working so far.

    Good luck and best wishes to you both

    M