Enzalutamide (Xtandi) Side Effects

[Rodeoz15]

Hi everyone

My father recently made the switch from Abi to Enza as Abi was no longer working. Enza immediately brought down his PSA from 8 to 1.2 within 2 months. Initially he had major fatigue as a side effect but 3rd month onwards he developed cognitive side effects (memory loss, blabbering in sleep, mild hallucinations etc.). We stopped Enza and got him admitted to a hospital where all his blood parameters have come back normal except for UTI for which he is being treated. We have good reason to believe his cognitive impairement is because of Enza. He was on full dose of 160mg.

For anyone who has experienced such side effects, how quickly did these go away after stopping Enza? It has been 1 week since we stopped and there is only mild improvement. Next plan of action will be to either go with Enza half dose or Darulotamide, although as no generic is available for Darulotamide, it will be extremely costly here in India.

We plan to halt Enza until there is improvement in his memory function.

Thanks!

[speranza10]

I would also think about apalutamide (erleada) if available. It is practically as effective as xtandi with fewer side effects. The best solution would probably be darolutamide, also due to the fact that it has a low ability to penetrate the blood-brain barrier but I realize that if one has to pay for it it is a big problem having a damned high price.

[Rodeoz15 in reply to speranza10]

Thank you!

[lcfcpolo]

I've been on Enzalutamide for over 4 years and luckily not had those side effects. Is it possible that the UTI caused these side effects? I'm on full dose Enzalutamide but certainly in the past some of the guys on here have gone onto half dose and had really good results.

[Rodeoz15 in reply to lcfcpolo]

Thank you! He has had frequent UTIs so that could also be the case.

[Doctorsceptic]

is apalutamide available to you? I would be very hesitant about restarting enzalutamide

[Rodeoz15 in reply to Doctorsceptic]

Thank you! Yes it is available. Will explore that.

[Explorer08]

Regarding the UTI, years ago my Dad’s geriatrician told us that persistent UTIs can cause a quick dive into dementia. My urology clinic told me to take D-Mannose daily because it prevents bacteria from adhering to the inside bladder lining. I get my D-Mannose through Amazon.

[Rodeoz15 in reply to Explorer08]

Thank you!

[olessepimme in reply to Explorer08]

Enzalutamide immediately halted the doubling of my PSA level and has, in 3+ months, reduced the PSA from approximately 400 to 5.7! I am feeling MUCH better and functioning MUCH more normally. Cheap Enzalutamide without a prescription - onlinecheappills.com/enzalu...

[rm9x]

Hi. If you’re not already, take xtandi before bed. This reduced the side effects for me or atleast while I was awake.

[Rodeoz15 in reply to rm9x]

Thank you!

[EdBar]

I don’t know your father’s age but a UTI can cause confusion and cognitive issues, we’ve experienced that with my father in law who is 87.

I’ve been taking Xtandi for 10 years now and about 4-5 years ago I started getting pretty bad headaches and cognitive issues, by MO Dr. Sartor recommended a half dose and I’ve been on the half dose ever since, headaches and cognition is much better although I do take a daily dose of Celebrex to help with them. I’m assuming your dad takes xtandi in the evening correct?

Ed

[Rodeoz15 in reply to EdBar]

Thank you!

[Firespring65]

My husband has been on Enza for about 8 months now, with triptorelin injection every 6 months. His main side effects are restless legs, hot flushes and cognitive problems – he’s become forgetful, there of non sequiturs or just ‘odd thinking’ patterns.

Our oncologist therefore suggested switching my husband to Abi but he’s not keen due to the general need to take steroids.

We’ve learnt so much reading the posts on this forum, including that orchiectomy could be an option to go ‘drug free’ and hopefully improve brain function and give some relief to his liver. In line with what others have written here, orchiectomy was never mentioned to us as another treatment possibility. My husband is all for it and we plan to discuss it at our next oncology meeting in three weeks' time. He is encourage by the fact that we have not read a post here on the forum where someone regretted having had an orchiectomy.

[gsun in reply to Firespring65]

You would still take a second line medication after orchietomy such as Enza. It only replaces ADT. I switched from Abi to Enza about three weeks ago and have bad fatigue 1-2 hours after taking it so now I take it before bedtime. Helps me go to sleep, which is a bonus.

[Firespring65 in reply to gsun]

Ah okay, I got the impression from some of the posts on here that some guys aren't on any meds. Anyway, we need to clarify with the MO when we have the appointment. - Yeah, the fatigue definitely is an issue with Enza. My husband initially took it in the morning but for that very reason switched to bedtime too. Wishing you all the best!!

[Rodeoz15 in reply to Firespring65]

Thank you!

[God_Loves_Me]

Here are my personal opinion,

I am sorry that darolutamid is not available in India

- What's his testosterone ?

- Other options take full break from xtandi and think about chemo or pluvicto ?

- After chemo Abi may start work again

[Rodeoz15 in reply to God_Loves_Me]

Thank you! His T is less than 10. We are planning to explore Chemo now.

[CancerConcierge]

Several others have commented, but I would like to also share that in older patients UTIs can cause delirium … I had two close relatives experience delirium/psychosis triggered by UTIs… it can take a bit for the antibiotics to kick in

[gsun in reply to CancerConcierge]

My dad went through that. He was about 95 when he got a couple of UTIs. I thought he was dying it was so bad. Then the next morning I went to the hospital and he was sitting up and said good morning. It was very strange.

[CancerConcierge in reply to gsun]

Yes, it’s very strange… and scary!

[Rodeoz15 in reply to CancerConcierge]

Thank you!

[garyjp9]

Agree with EdBar --- a UTI can definitely cause the cognitive issues you mentioned in your post. Wait until he completes the course of antibiotics before adding more concerns.

[Rodeoz15 in reply to garyjp9]

Thank you!

[Rodeoz15]

Thank you!

[SteveT44]

Hello, new to this forum. I was diagnosed with low volume stage4 with a met a little over a year ago. I opted to forego the Lupron shots and do an orchiectomy and radiation. I also started with Xtandi at 180mg a day. After a few months I went to half dose on the Xtandi due to QOL issues. These where extreme fatigue, balance issues, 15+ hot flashes a day, brain fog, and a god-awful taste in my mouth (never had UTI issues though). Since going on half dose Xtandi, QOL has improved. It probably took a month or so to see the improvements. I still experience all the listed side effects but at a lower intensity. The bad taste eventually went away. As of my last blood test, my T and PSA are undetectable.