Xtandi: Anyone using Xtandi and what if... - Advanced Prostate...

Advanced Prostate Cancer

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Xtandi

Madbeach profile image

Anyone using Xtandi and what if any are your side effect experiences, plus success of keeping progression at bay. Thx in advance

51 Replies

Try typing Xtandi side effects into the site search tool … tons of answers to your question already there, thanks.

Madbeach profile image
Madbeach in reply to Kaliber

Yes, have done some research but wanted to get the replies directly from actual users.

Kaliber profile image
Kaliber in reply to Madbeach

If you take time to read the comments, even on the first post that comes up about a caregiver asking about Xtandi ….. you’ll find a long ( gentle ) diatribe about Xtandi side effects , two of those in fact from me and every other person that answered that thread is a Xtandi user as well. There are well over 1000 posts with threads exactly the same. We have hammered Xtandi to death here on the group. Most likely every single thing you ever wanted to know is in that extensive list of posts. If you read all 1100 plus of those, I suspect you would know everything about Xtandi. The vast majority of it directly from users. Plus .. it would be a mistake to dismiss the sage words of caregivers directly sharing the Xtandi experience of their mate … “ they “ know all about it, believe me … even say some things many APCa dudes here are too proud to admit.

Just say’in 💪💪💪❤️❤️❤️

Madbeach profile image
Madbeach in reply to Kaliber

Ok thx. I just joined the group and didn’t realize I could search on my question to see if it was posted before. Sorry, I’ll try to not do that any more.

Kaliber profile image
Kaliber in reply to Madbeach

Nolo problemo brother warrior… you’re doing good … welcome to the brotherhood …just great guys and , caregivers and the best information available. You picked a great group to join. It’s just, speaking for myself … I’m tired a lot lately and done Xtandi into the ground. It’s exhausting. Just do it, whatever it is you want to do ….. all of us will help the best we can … Kripes we’re all brothers , everyone should get some Lea way and a big hug here anyway …. Right yayahahahaya yayahahahaya.

Just say’in ❤️❤️❤️

Madbeach profile image
Madbeach in reply to Kaliber

Thx, I needed to hear some comforting words. Been crying a lot lately.

Kaliber profile image
Kaliber in reply to Madbeach

Yep, I suspect that everyone on highly altered hormones ( in adt ) can break out crying on a whim. If you are taking opiate pain meds , they can do that too …plus a bit of depression is natural for guys like us. These aren’t the best of times …are they ? I know I can break out bawling and be there sitting laughing about it at the same time yayahahahaya. I don’t actually experience much, if any, depression …

. But if YOU do , you should mention it to your medical care team. They have new drugs that are extremely effective at helping guys like us. Many guys here take them and claim wonderful results from them. Just ask your docs about them. For the little Debbie downer I do experience, I take xanax and it clears up things quickly for me.

Peace brother 💪💪💪😁😁😁❤️❤️❤️

dhccpa profile image
dhccpa in reply to Kaliber

I think what you're sayin is that the side effects of overdiscussing the side effects of Xtandi are worse than the side effects of Xtandi. Is that correct, Doctor?

Kaliber profile image
Kaliber in reply to dhccpa

Yayahahaha now my Lupron fogged head is spinning 😂😂😂😂

Madbeach profile image
Madbeach in reply to Kaliber

I’m the wife and hoping to get info on this site. Thx

Kaliber profile image
Kaliber in reply to Madbeach

Sounds like hubby is lucky to have you. I stand by what I said about caregivers earlier in this thread. You’ll find lots of company here . 💪💪💪❤️❤️❤️

Madbeach profile image
Madbeach in reply to Kaliber

Thx and the very best to you on your journey.

Kaliber profile image
Kaliber in reply to Madbeach

Big warm fuzzy hug …❤️❤️❤️

spencoid2 profile image
spencoid2 in reply to Kaliber

i do not see any place to check if your question has been asked. where do you find that?

Kaliber profile image
Kaliber in reply to spencoid2

As an example …. the question was about “ Xtandi side effects “ . In the upper right hand corner of the header is a box that says : “ search healthunlocked “. Typing in “ Xtandi side effects “ returns 1100+ hits. That’s the place.

Does that help ?

🦋🌻🌼🌸😁😁😁

spencoid2 profile image
spencoid2 in reply to Kaliber

that search is for health unlocked entire site. you get thousands of hits including a lot of irrelevant ones. i want to be able to tell if my question was already asked on the advanced PC forum.

Kaliber profile image
Kaliber in reply to spencoid2

You can try narrowing your search with more key words … that’s what I’d do …. but even better pm Darryl, the group moderator, and I’ll bet he’d help get your information in a flash. Darryl is super.

Best wishes 💪💪💪

spencoid2 profile image
spencoid2 in reply to Kaliber

I just wanted to be able to see if a question had been asked many times before asking it. Do not want to make it a major research effort each time.

I agree, it's best to search the forum so people don't have to keep repeating the same answers over and over again.

Personally, I've answered questions like "What's Docetaxel like?" about 20 times so far and it's really a waste of time to keep doing that.

After reading the posts on the forum, if you still have a specific question that wasn't addressed, feel free to ask. I'm sure someone can answer.

Thanks for your understanding.

Here's the prescribing sheet for Xtandi, a valuable source of information. Looking at clinical trial data involving a large number of patients is more valuable than anecdotal evidence from a few people on the forum.

astellas.us/docs/12a005-enz...

OK here is MY Xtandi experience.Dx on Jun 2018, PSA 1303, Stage 4, fully metastized throughout my skeleton.

On Lupron since. PSA down to 1.2 Then around a year ago PSA had rapidly grown to 9.5.

Added Xtandi 12mos ago. It helped bring PSA down to .4 by Dec 2020.

5mos ago started up again and continuing to increase. 2.4 last week.

Many get a couple of years. It is still helping. When PSA reaches the 20s will likely add or replace with another treatment. I am BRCA2 positive.

Xtandi side effects FOR ME are loss of strength, stamina, sleep deprivation. All treatable to some degree with some effort. Xtandi didn't add many more SE to those already used to from Lupron.

For ME it seems like a real wonder drug.

2Dee

Welcome to the club. As others have said Xtandi is a mad topic. Just about everyone has used it and everyone has a different result. I personally loved it but after 3 months it passed the blood brain barrier and I had a seizure. I have since had great results with Zytiga and only mild hot flushes just when I go to bed. I take my two tablets as soon as I wake in the morning then wait an hour for breakfast then take the prednisolone , I have use it since April 2018 and am thriving. Past 81 now and cheerfully remind my Oncologist that when I was 76 1/2 and had psa of 9000 that he said he hoped he could get me to 80!

You could take one 250 mg Zytiga and a pred. with your low fat breakfast. That's what I do. PSA unmeasurable, T<7

When you had a seizure did it keep,you from being able to drive? My hubby has just recently been prescribed Xtandi and right now isnt willing to take it because of that and the other 4 top SE listed. He is 87…still active on volunteer fire dept. and other interests involving driving. Would appreciate input.

I spent a day in hospital. Had scan and observation and referred for an MRI brain scan. None of these showed a problem to my GP. I contacted Oncologist and he immediately stopped the Xtandi and switched to Zytiga, because of the blood brain barrier warnings on Xtandi. I did not drive, voluntarily until MRI results and there was no adverse referral by medicos to Drivers licence authority (RTA in Australia). I have since passed 3 medical for licence.

Thank you for responding. He is only seeing urologist, and a new one at that, because former urologist retired. I will show him this. He doesn’t do anything on internet himself.

I’ve been on Xtandi for almost 6 years now. For 5+ of those years it helped to keep my PSA undetectable. SE’s include fatigue, headaches, cognitive issues, BP issues etc. SE’s were cumulative over time, after about 3 years at full dose my MO recommended cut it to a half dose (80mg) which was effective until just recently when my PSA crept to detectable levels again. I manage side effects by taking in the evening, using Celebrex for headaches, exercising - helps with fatigue and monitoring my BP and working with a cardiologist. Feel free to check my profile for treatment history.And feel free to ask away on this forum, if anyone feels a question has been asked before they can skip to the next post. Xtandi has been very effective for me, yes the side effect profile is rough but tolerable and manageable with other meds for me.

Ed

Madbeach profile image
Madbeach in reply to EdBar

Thank you Ed. I’m the wife and trying to get info from here for my hubby. Best to you.

EdBar profile image
EdBar in reply to Madbeach

Your husband is fortunate to have your support, makes all the difference to have a supportive spouse or family member.

Ed

monte1111 profile image
monte1111 in reply to EdBar

Go, Ed, go.

Kevinski65 profile image
Kevinski65 in reply to EdBar

Did you go back up to 4?

EdBar profile image
EdBar in reply to Kevinski65

I went up to 120mg and my PSA ticked down a bit, which was a good thing but I felt the difference and lately it’s been messing with my BP. During my recent visit with Dr. Sartor he laid out several options if my PSA continues to rise and said “don’t beat yourself up with a higher Xtandi dose since we have other options “ so I’m back down to 80mg and we’ll see what my PSA is, I get labs on Friday.

Ed

Kevinski65 profile image
Kevinski65 in reply to EdBar

I take atenolol. It seems to control it but there's side effects to that too.

EdBar profile image
EdBar in reply to Kevinski65

Ya my cardiologist added Bystolic to my BP meds which is also a beta blocker and ya there are SE’s but I was able to reduce the dose and I seem to tolerate it better and it’s still effective.

I’ve been on xtandi for about 6 years. My side effects are minimal. Maybe a little fatigue but I take B12 shots regularly and exercise. No other side effects to mention. My PSA was undetectable for about 4 years. Then it crept up to .3 and has stayed there for the past year or so. Hope this info helps.

monte1111 profile image
monte1111 in reply to DonM253

Go, Don, go.

Been on Xtandi now for almost 5 years, I’ve had most of the side effects listed on the bottle literature. Worst one was the neuropathy due to the wrong pain killers. I have to take it at night so that most of it I sleep through. I does get better with time. On the right. Side of the grass 😁😁. Worst part is the cost 😡😡😡. Keep up the fight warrior 🙏🙏🙏

Go, Larry, go.

I have been on Xtandi since Nov 2020. My PSA was 568 then now 4.3 and it has stopped the spreading. The only issue is I am fatigued in the evenings, I am 78 so that plays a part in it.

I’ve been on Xtandi for almost a year and PSA remains undetectable. SE are as mentioned fatigue, brain fog, and sleep deprivation. Also experiencing sore joints and muscle pain but that could be any number of other things. Always feel free to ask or reach out directly. I just turned 55 too so a stage 4 diagnosis in a younger guy than most.

Was on xtandi for 4 years, no problems. But everyone is different, watch for symptoms.

monte1111 profile image
monte1111 in reply to Magnus1964

Go, Brian, go.

Hello, I have responded on this site many, many times to others who have asked the same or a similar question to the one you are posing. I have been on Xtandi (enzalutamide) for nearly four years. Side effects? You bet, but given the alternative nothing I can’t handle. I will be 76 in September.

monte1111 profile image
monte1111 in reply to RyderLake2

Go, Ryder, go.

My father has been on it for 4 years and he takes his pills in the morning (4 of them). He only states that he has hot flashes sometimes and is often tired however working out helps to keep his energy up. He is currently helping me to build a deck and still goes hiking with my mom. He is stage 4 cancer but his psa has been undetectable.

monte1111 profile image
monte1111 in reply to mcom

Go, mcom, go.

Using Xtandi for two months with monthly Lupron shots. hot, after 6 Taxotere infusions and monthly Lupron shots. HJad and RP. Xtandi, trouble sleeping... hot flashes. So far that's it. PSA undetectable since third chemo session; swollen lymph nodes shrank.

Feel free to ask any question. You are welcome here

6 mos Xtandi for me and counting. Working well so far. Fingers crossed for long time

Have extensive bone mets which are now stable. 0.1 psa. 4 years Xtandi in August. Take at bedtime to help with fatigue. Go, Monte, go.

Go, Madbeach, go.

My father had a seizure while on Xtandi. It’s listed as one of the side effects. He then switched to Zytiga.

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