Enzalutamide

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Hello! I am taking daily Enzalutamide (started about 6 months ago, 4 tabs each morning) after chemo (Docetaxel) with Prednisolone nearly 3 years ago and since then the standard Decapeptyl injections every 3 months. When I was diagnosed with advanced prostate cancer metastasised to bone I had a pretty remarkable PSA level of 4,890 ! By the end of 2023 my PSA was way down to 3.5 but then started gradually climbing again to 192 by November 2024. For a brief while Bicalutamide together with Decapeptyl coped with the 'errant' cells but by last December the decision was made to start me on Enzalutamide. All thanks to the NHS as this is a very expensive medication. Enzalutamide seems to be most impressive and has brought my PSA down to 21.5 so far. Am seeing oncologist very soon and I'm hoping for further PSA lowering. So far only side effects are increased hot sweats and other experiences which may or may not be connected: poor balance, breathlessness, aching joints and the need for a good siesta every day. (But these may be as much connected with my 78th birthday this year!) I don't know anyone else who has been prescribed Enzalutamide and am keen to hear how others are getting along with it. A positive outlook and sharing love with family and friends has always seemed vital. Thanks for reading this!

Alwayshope 27 days ago

Hello Affirmative . My husband had 33 sessions of EBRT in 2020 and was originally on Bicalutamide and Prostap for 18 months but after a recurrence he was put on Enzalutamide for 18 months until it also stopped working and his PSA started to rise again. A PSMA PET scan confirmed spread to distant lymph nodes. He was unsteady on his feet, had brain fog and more fatigue whilst on Enzalutamide and these mostly disappeared after he stopped taking it with the exception of the fatigue. He was 79 at the time and then had 6 cycles of Docetaxel but when progression was seen again he had 6 sessions of SBRT to the lymph nodes and adrenal glands affected. He has recently had a progression to the bones so had EBRT to these and this month he has switched from Prostap to Relugolix. It is still a work in progress as the PSA is still rising. My husband has a particularly aggressive form of prostate cancer and for many the Enzalutamide remains effective for a longer period of time.

I agree that having a positive attitude is essential and wish you well for the future.

eddiel 27 days ago

Hi Affirmative, and a warm welcome from me, to the forum, I too have advanced prostate cancer with bone mets and have been on Enzalutamide for 7 months, and like you have seena big drop in my PSA through my last three blood tests, with hopefully a couple more, and I also have the hot sweats, fatigue, balance issues and aching joints not helped by my osteoporosis. My friend I'm a little younger than you, almost 60yo, but Enzalutamide has slowed me down a little more, but not stopped me from getting on with living, enjoying holidays and being with family, stay positive my friend, and best wishes with your oncologist appointment.

Eddie

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