Side effects of Xtandi

[westjl2]

I have had some radiation and just came off of eight rounds of chemo and started Xtandi last week. Can anyone tell me of the most significant side effects you’ve experienced with Xtandi. I had nausea before but it seems to be worse now. I also have severe hot flashes and feel like I’ve got a severe case of the flu with more than usual achy joints and legs. I have a condition called restless legs syndrome, and that has gotten far worse this past week as Well.

So I decided to stop Xtandi for now, and let my system flush itself out before I decide whether to continue. But if these are the side effects of Xtandi, I am not prepared to take anymore of this. I’ve had all I can take after eight months of chemo and other treatments. No quality of life right now.

[God_Loves_Me]

may be time to switch to apalutamide or darolutamide

[lcfcpolo]

Sorry that you have had such a severe reaction. Darolutamide maybe the future. On a personal note, I've been on ADT and Enzalutamide for over 3 years and the hot flushes stopped after 1 year, never had any nausea so far. Yes some fatigue and a slight runny nose but it could be from the ADT as much as the Enzalutamide (Xtandi). Good luck to you.

[tango65]

This is the info about side effects from the FDA, the data they use is from the clinical trials, Paragraph 6 has a detail description of side effects.

accessdata.fda.gov/drugsatf...

[billfenley2 in reply to tango65]

Thanks for this, tango. The revelation for me, and one I'm really glad to see, is the placebo numbers! Calling John Sarno!

[Secretary_Bird]

I had restless legs for about 3 months (which was miserable) and then they stopped. My hot flashes also got a lot better but they haven’t gone away completely. Net effect is that I went from getting up in the night 7-8 times to now just 1-2. It’s hard but manageable.

[London441]

How much do you exercise and what kind?

[Explorer08]

I am on both Xtandi and Orgovyx. I’ve found that heavy exercise helps a great deal to mitigate side effects. Gym workouts every other day.

[Nubeqa22]

Husband was on Xtandi for over a year; no side effects except runny nose… until he had a tsa (mini stroke). Will never know if it was due to the Xtandi, but he was quickly switched to Nubeqa. All going well so far. 🙏🏻

[EdBar]

I’ve been taking Xtandi for about 9 years now, for me the biggest side effect is fatigue and brain fog or memory issues. I’ve also experienced headaches, joint pain and blood pressure issues. But it’s tough to distinguish what is caused by Xtandi and what is caused by Lupron. I treat the side effects with other medications and exercise. I also try to keep my brain active through reading and some of the hobbies I have that require study and learning. Hot flashes I’ve handled with estradiol patches which have virtually eliminated them and have the added benefit of contributing to bone health and maybe even another way to treat my PCa.

Ed

[nitefly50 in reply to EdBar]

ditto that, EdBar...I have had the same SE's from Xtandi...I exercise (especially long distance fitness/bicycle rides 3-5 days/week + Ab Board workouts with light lifting). I'm going to ask about estradiol patches next time I go in.

[BrianF505]

For me it was profound fatigue. So much so that I eventually had to quit work and go on SSD. Worst day of my life was sitting in SS Office at 57 waiting to sign SSD paperwork.

Lots of life modifications to deal with the fatigue. But I eventually found my niche. Rest (daily naps) daily exercise, meditation all helpful. And, of course, be mindful of overdoing it cuz you’ll have to pay the Piper.

But, that being said, I got a nine year run on Xtandi w/o ADT before needing to find something else. Next week is PSMA Pet and then I start Orgovyx and Nubeqa.

Best of luck.

[j-o-h-n]

It's always darkest before the dawn..... Stick it out!!! At 69/70 years old you've got plenty of years to catch up to me.....

Good Luck, Good Health and Good Humor.

j-o-h-n

[Chris52981]

my dad had to get zofran for the nausea and certain food he couldn't handle

[Bruce66]

So that's where my runny nose is coming from! Been on Xtandi for probably half a year. Had major restless leg (couldn't stay still for more than 10-15 seconds) - Doc gave me gabapentin and that solved that problem. Helps you sleep, too.

[jazj]

For those that have experience on Xtandi, aren't there multiple dose options? Would be good to know what doses people are taking. Seems like the most common side effects mentioned are fatigue by far and then the runny nose and brain fog seem to be mentioned a lot. I'm curious how soon after starting do the side effects come on typically and how soon do they go away when you stop?