First month on Xtandi - the good and the not so good

[Benkaymel]

Given all the horror stories I've read on here about the SEs of Xtandi, I was very apprehensive about taking it. Notwithstanding that, I decided to go straight in at the full 4-pill, 160 mg dose from day one and see how I get on.

The good news is that a month in, I've had very little in the way of detectable changes to SEs compared to being on Prostap alone - may be a little more fatigue and a bit of restless leg syndrome at night but otherwise, not bad. I started by taking it in the evening as most said it made them sleepy or at least, helped them sleep. I haven't noticed that so I moved it back to early afternoon hoping it might reduce the RLS and it may be a little better. I might try taking it in the morning to see if it clears completely.

Also good is that my PSA is down again from 0.99 last month to 0.33.

The not so good is that the two larger tumours on my rib and spine don't feel any better - if anything, I'm getting a bit more discomfort from them. Has anyone else found bone mets get more painful at first on Xtandi? I'm assuming they should get less so over time?

[Kaliber]

most guys have few to mild SEs with Xtandi .. only a small percent have the severe SEs. Give it a bit, the Xtandi should shrink your Mets and put them to sleep , figuratively speaking, and you’ll become way more comfortable as a result.

[Benkaymel in reply to Kaliber]

Thanks Kaliber, that's certainly what I'm hoping.

[Hidden in reply to Benkaymel]

Is it insomnia? I haven’t slept longer than 90 minutes in a stretch for almost 8 years now . It s a great problem . With me it’s nocturnia which means I pee every 90 minutes all night long . Fractured sleep at best . My first two years I didn’t pee at all due to a foley and tubes into kidneys.. Somehow I escaped that hell . Good luck to you Sir!

[Benkaymel in reply to Hidden]

No, I already have to pee every 90 mins or so through the night due to my enlarged prostate and the PCa. I generally get to sleep ok in between peeing but the RLS is new and makes that more difficult.

[Hidden in reply to Benkaymel]

I’m the same except severe neauropathy burning in hands and feet at night . I can relate sir . Take care ✌️🏜

[Seasid in reply to Benkaymel]

Do you have sleep apnoea?

[Benkaymel in reply to Seasid]

I have real trouble sleeping now but I think that's down to the chemo. I came off Xtandi a couple of months ago.

[Seasid in reply to Benkaymel]

Your wife/mother should be able to observe you while you are sleeping. My mother was sleeping in my room and said that I stop breathing. Sometimes a nurse could report that if you are in a hospital. A gold standard is an overnight sleep study. That is enough for the sleep doctor to know that your legs move. Otherwise they will hook you up and monitor you. Are you sweating? Do you have headache? The best is to get the overnight sleep study.

[Benkaymel in reply to Seasid]

I have the occasional hot flush. No headaches, I just can't seem to fall asleep very easily - nor stay asleep when I do drop off.

[Seasid in reply to Benkaymel]

They tested me for leg movements and you have at least that condition. That could wake you up. I suggest that you consult a sleep doctor and ask for overnight sleep study in a hospital.

[Mrtroxely]

Yo dude.Enzalutamide definitely works.

Don't think timing of tablets makes a difference? Just gets in your system and does its job.

Nice walk, wind rain or snow to help with breakdancing at night

A tired body helps sleep at night restess Iegs and joints (as much as can do)

Keep eye on new side effects.

Have read of instruction sheet and possible side effects.

Just advice from my experience

Have trust n faith in it, everything has side effects, just which ones we can handle.....

Bit like dating or marriages

[Mrtroxely in reply to Mrtroxely]

On this note me and enzalutamide are on a trial seperation.Kept me up all night, most nights and made me upset n extremely sad...

Me and doxetaxel are dating at mo!!!

Seems to be going ok.

I'll probly dump it after 6 months though, had few arguments already.....

[Benkaymel in reply to Mrtroxely]

Thanks Mrt, I try to get as much exercise in as I can to tire my legs out during the day!

[Wahoo_]

i take 2 80mg tabs. My first bone scan in Feb of 20showed 4 Mets, a small one one my hip and 1 on each of three ribs. My last bone scan in March showed no Mets! I take them at night and really have SE’s other than the obvious ones related to this med.

[Benkaymel in reply to Wahoo_]

Very encouraging, thanks Wahoo. I hope to report similar results in time!

[Mecrispy77]

Hello, my Xtandi SEs are currently chest and back pain. Not able to lift as much as before without feeling spinal compression, I believe it flares up my Spinal Stenosis. Been taking for 3 months now. Started on 160mg, it hurt my chest bad, ER visit bad. Stopped for 2 weeks, pain disappeared on day 3. Started back up on 80mg, tolerable. Dr order the 4 pill combo instead of 2 pill, so I will try 3 pill, 120mg. Also noticed pain in my teeth.

Loaded up on Vitamin E,D, and Calcium. Seems to help teeth pain and hot flashes.

Peace.

Crispy

[Benkaymel in reply to Mecrispy77]

Thanks, I get some back pain too. No tooth pain as yet though. I take some Calcium, Vit D3, K2 & boron but not sure it helps the hot flushes.

[lookout4]

I'm in month 2 with Xtandi, have all that you describe....But, the EBRT really helped with the pain on the bone mets. the radiation came w/ a price tho, especially the Pelvic region. it took 5 weeks to poop right, but I'd 'doo-doo' it again.

As far as Nocturia, in the last 2 nights i've only woke up 2x to pee, the other 6x I just pissed in my bed! JK! IDK why, I'm not on any meds for that (they made me sick). The only thing I can think of is that maybe my prostate is shrinking, like Johnson and the boys. Maybe the new exercise regime is helping that, IDK. I used to only sleep - 5-6 hrs a night (normal) now it's 10-12, which I don't like.

[Benkaymel in reply to lookout4]

I'm thinking about asking for RT to my bone mets if they get any worse.

That's great waking only 2x to pee. I laughed out loud at your joke about the 6x you pissed the bed 😂 - thought you meant it for a moment! I'm still getting up 6 to 8 times a night ☹️. I hear you about the shrinkage!

[deano58]

Been on Xtandi 160mg daily for 16 months. Only noticeable SE's are a bit more fatigue than the Lupron only, and periodic constipation which started at the same time as starting the Xtandi. I take mine at bedtime.

[Benkaymel in reply to deano58]

Thanks deano, sounds similar to me. Drink plenty of bland fluids and keep up the exercise to help with the constipation (and fatigue).