Enzalutamide any advice/tips for dealing with side effects

[Ronnie7C]

Stage 4 PCA for last 3 years. Had 6 cycles of Chemo and then Abiraterone for 18+ months (PSA dropped to 0.2 then more recently rose to 58 in June '23 ). Abiraterone eventually stopped working and I was able to join Radium 223 trial. Completed 5 of 6 cycles of Radium 223, then elected to stop since scans showed mets still progressing and bone pains was brutal (PSA has continued to rise and is now 113 as of August '23). Radium223 has left me in a very weakened state and extremely fatigued.

Now doctors are suggesting that possible option is to switch onto Xtandi/Enzalutamide. Anyone in the same or similar situation. What are the main side effects of Enzalutamide and does anyone have advice or tips with dealing with side effects of this drug. Any advice would be much appreciated. Thanks

[lcfcpolo]

Enzalutamide (Xtandi) has been my first line treatment with Lupron ADT. Biggest side effects and these could well be caused by the Lupron ADT are fatigue, muscle loss and fat gain around my waist. Exercise is the key (memo to self). I find that once I get going I'm OK. Good luck to you my friend.

[RyderLake1 in reply to lcfcpolo]

Hello,

Studies show that taking Xtandi (enzalutamide) after Zytiga (abiraterone) works better than the other way around (i.e. Xtandi first). It is not going to work forever. As for side effects, I took Xtandi for five years and my three main side effects were loss of libido, loss of body hair (fortunately not on my head), and fatigue. For me, the side effects were not serious, quite manageable and with the help of my wife, family and friends learned how to deal with all of them. Good luck!

[Ronnie7C in reply to RyderLake1]

Thanks for the reply. very helpful

[Ronnie7C in reply to lcfcpolo]

Thanks for your response. Much appreciated

[Tall_Allen]

Is Pluvicto available there?

[Ronnie7C in reply to Tall_Allen]

Yes it is available here but madly expensive; and to be honest really don't wish to go down that road. Thanks for taking the time to reply. Very much appreciated.

[Kaliber]

guys here have various SE’s with Enza , most are medium to light and anecdotally speaking … are well tolerated. Enza has worked very effectively for long periods ( years ) for a significant number of guys here. ( me too )

Hopefully you get similar results and extend yourself significantly.

❤️❤️❤️

[Ronnie7C in reply to Kaliber]

Many thanks for your reply, which is very encouraging

[Kaliber in reply to Ronnie7C]

❤️❤️❤️

[Ramp7]

Check out Darolutamide as well.

[treedown]

I was put on Xtandi after recurrence and had every side effect to one degree or another. If I had stayed on it I would have needed to retire and take anti-depressants. But we are all different so you may be fine. For me back on Zytiga and doing great. May have to give it another try when/if zytiga fails.

[Ronnie7C in reply to treedown]

Thanks for the comment. Much appreciated. Maybe the half dose approach might be the answer for Xtandi since it worked for me with Zytiga.

[treedown in reply to Ronnie7C]

That worked for others on this forum.

[EdBar]

I’ve been taking Enzi for about 9 years now. About 5 years in the SE’s seemed to be getting cumulative, fatigue, cognitive issues, headaches, BP issues, etc. Dr. Sartor my oncologist suggested reducing the dose to 80 mg and that helped quite a bit and it remained effective at that dose for 2+ years. Other ways I’ve dealt with SE’s include Celebrex for headaches, adjusted BP meds and exercise daily. Some guys benefit from Ritalin or Adderol for fatigue.

Ed

[Ronnie7C in reply to EdBar]

Many thanks. Have read about the 80mg dose approach (same effectiveness with supposedly lower toxicity). Much appreciated Ed

[London441]

Exercise is your best remedy always. Cardiovascular and weight bearing.

[Ronnie7C in reply to London441]

thanks for your comment, couldn't agree with you more.

[Bacana]

My husband developed hip pain while on Xtandi. It got pretty severe and he stopped Xtandi for a couple weeks. Once pain improved he started back up at 1/2 dose for 2 weeks and now back on full dose. We’re not actually sure if the hip pain is a side effect or not. Guess we’ll find out soon.

[j-o-h-n in reply to Bacana]

With a UserID Bacana you gotta be cool....... so you can stand my humor (I hope).

Note: Hip pain HAS to be a side effect....I rest my case.........

Stay cool.......

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 10/02/2023 6:32 PM DST

[Ronnie7C in reply to Bacana]

Yes, the half dose method sounds very interesting. For the bone pain, you might want to try Arcoxia tablet (1/day). thanks for your response.