Xtandi Side Effects

[Lakefisher]

Been on Xtandi for about 2 months. PSA went from 5 to 0.5, so that's good. So far, the only side effect I've had are stiffness in my legs. Oddly, I also seem to be dreaming more. I am interested in what effects other folks had, especially those who have been on it for a while. Forewarned is forearmed.

[afab]

Fatigue and "brain fog" are common side effects that can be mitigated by exercise and naps.

[Jimtjr]

I have been on Xtandi over 4 months now. I have chemo brain, muscle cramps, hot flashes, fatigue and breathlessness, taste problems, and neuropathy. Some of these were there from my firmagon shot and Xtandi increased them. In the last month I got lower back aches that a bone scan could find no cause for so Dr thinks it is the Xtandi. So far these symptoms are mild to moderate so tolerable although aggravating. The chemo brain is the most frustrating. My PSA dropped to 1,7 from 2.8 - it had been rising before the Xtandi. If my symptoms worsen, my Dr said he could lower the dose which is at 40 mh now. I hope this helps some.

[charmander]

I'm starting on Xtandi this week after having been on Zytiga for nearly 2 years. I'm also fearful of the "side effects" so Lakefisher's question is great for me too!

Charlie

[Johnstonearch]

Increased thirst, leg and hand cramps, dreaming, short term memory loss, fatigue and diarrhea. I have been on it two years now.

[bb66hotflash]

I was on Xtandi for 20 months with PSA dropped and holding at 0.07. Side effects were mainly fatigue. At that point, PSA started to rise, stayed on Xtandi for another 13 months. Finally had to stop when fatigue and lack of motivation got to be too much. PSA was now 1.0. Now working on other alternatives. Wish you the best. Hold out, if you can, as long as possible, if it is working.

[JoelT in reply to bb66hotflash]

You can still go back to Xtandi in the future if your numbers get back up high.

Joel

[bb66hotflash in reply to JoelT]

absolutely

[Lakefisher in reply to JoelT]

I read a post here that CVS/Caremark won't take new prescriptions for Xtandi in 2017. So if that's your pharmacy, if you go off you may not be able to get back on with them.

[Jashelby in reply to Lakefisher]

I was put on Xtandi first time this year (2017) from CVS/Caremark so guess that wasn't true.

[Bezil1429 in reply to bb66hotflash]

You mention "working on other alternatives" . Would you share some of the other treatments you are considering as alternatives. Is this in the chemo category or one or more new treatments not yet approved by FDA, etc. And are you working with an oncologist with an open mind? My onc is a great guy, but he works with many cancer types, and he's not too imaginative re: PC.

[bb66hotflash in reply to Bezil1429]

I completed Provenge in October. I am in a Clinical Trial with AZD-8186, but just stopped for side effects. Then There is abiraterone, Xofigo, several chemo's and possibly other clinical trials. Yes I have an excellent Oncologist who specializes in PCa.

[ctarleton]

>Forewarned is forearmed....

And Four Armed is Half an Octopus!!!

(Sorry, couldn't help myself.)

But, seriously, after 5 months on Xtandi my PSA dropped from 94.5 to 3.4, and may still be going down. Only some light fatigue, but am still OK to walk a leisurely mile, or to mow a lawn, slowly. Hot flashes increased slightly over what they already were after 3 years on Lupron, but I'm used to them. Might possibly (?) be very slowly developing very slightly enlarged breasts, but still far smaller than many "man boobs" I've seen on other 68 year old men who haven't been on ADT for 3.5 years.

Charles