I started Xtandi 11/30/22 on top of Orgovix when PSA was 29 . Late January23 PSA was down to 4.1 and i was tolerating it well i thought. I dont want to let the beast loose but dont want to kill myself either. Recently 4/7/23 had an issue with my neck and shoulder causing so much pain I could not turn my head to drive and sleeping was difficult. Motrin helped alot. It was like this for 5 days at least. My sinuses were so clogged to the point i had to breath through my mouth . I could not remember straining myself in any way. I have been on flonase for 3 weeks and every other sinus med I could find. I pound out 110 pushups every morning had to quit that. I sent a note to my MO asking if it could be the Xtandi but did not hear back. So I took it upon myself and one evening did not take any dose, took one Aleve and went to bed. Voila, next morning the pain in my neck and shoulders was nearly gone , my sinus have cleared 80% ,my brain fog was gone and I was a new man! Now what do I do? I went one more day without and then started back last night at half dose (80mg). I am thinking to stay at 80mg for a few days and slowly increase back to full dose because it is clearly working. Does anyone have any advice or had experienced something similar. Is a short vacation from use a big deal.?
Not Tolerating Xtandi : I started... - Advanced Prostate...
Not Tolerating Xtandi
Sorry to hear you're having such problems but it's unlikely that missing one dose of Xtandi would have such an immediate effect because it has a half life of 6 to 7 days. Maybe it was the Aleve? You need to find an MO who you can talk to about it.
Interesting observation on the Aleve altho i was doing 400 mg motrin twice a day so I could move around. Not sure aleve could have that effect on sinuses?. I was surprised at the immediate effect as well
I've been on Xtandi for about 6 months and do get a stuffed up nose at night which sometimes means I have to breath through my mouth - not very comfortable. I try using inhalant oil but it doesn't help a lot. Recently I started getting a stinging sensation on my lower right chest - my GP thinks it might be nerve damage but I don't know if that's due to the Xtandi or not.
weeeeel …. I’m probably the current poster boy for “ extreme “ Xtandi side effects, here on the group. It’s put me in a wheelchair and kicked my a$$ sideways to Tim- buk- 2 . The list of possible awful Xtandi side effects is lengthy and I’ve got all of them. Anecdotal information , here on the group, says only a very small percentage of Xtandi users actually experience Xtandi as I do ….. most users have much milder , more comfortable, experiences with it.
Interestingly, the thought exists that the stronger and more extensive the SEs , the more sensitive you are to Xtandi …the more benefit you get from it. Also anecdotal. In my case that beneficial thought proves to be true. When DXed ( very late ) I was being encouraged to enter inpatient hospice, my PSA 1400 -1600 and body systems totally failing. Instead I opted to long shot Lupron - Xtandi - Zometa and now its 54 months later and I’m still kicking. ( pretty strongly too ) if Xtandi works for you, initial low dose opiates ( ie: 5 mg Vicodin X 4 times daily ) would probably make the discomfort SEs mostly disappear.
WHY ??? For me the “ why “ ( would I keep taking Xtandi, …considering ) , is that Xtandi has been instrumental in giving me several additional years of life when a table full of doctors thought I was done for. My will to live is strong, I kick this SE crap to the curb when it gets in my way ( so far lol ). In my line of thought, if Xtandi brings your PSA down to undetectable and keeps it there , maaannnnn , that’s great for me. I’ve got my foot on its neck and ima gonna keep it there until it quits working. Of course you have to make your own decisions and do what works best for you. Far as I can tell, in general, Xtandi isn’t much different than the other ADT treatments, “ for most people “ . What doesn’t kill you , just makes you stronger “ the old saying goes …. Lots of wisdom in that. I never thought that life would go on same as I was before being DXed, and it hasn’t , just say’in. You might give full dose Xtandi more time to work and get that PSA down to undetectable, you get used to and adapt to those those SEs over time, ……and go on with your life while you are able.
❤️❤️❤️
I am hopeful to stay on Xtandi and will test the waters a bit longer. I have read others with initial overpowering SEs who reduced dosage and eventually were to go back to full without issues. It is working so I will let it beat me up a bit more before I give up..
for sure Tall_Allen is the medical brains here. His advice is “ always “ top notch and worth following. ( zytiga and check for allergic reaction with your medical team mentioned below ). Getting undetectable and staying there is the goal by any means IMHO.
lol
I came of xandi after a month ....Was like old man shuffling about
No sleep
And suicidal thoughts a few times a day!!!
I opted for chemo over xandi
I’ve heard that from others too …. Can’t blame you for switching brother. I shuffle too , but mostly use a wheelchair because I can’t shuffle very far yayayayaya.
❤️❤️❤️
There are other versions of the drug with differing side effects.Xiandi(enzalutamide)
Aplutimide
Daralutimide
Zygata works in different way.
You are not kidding about the strong will to live, and the willingness to LIVE while you are alive. Awesome
💕💕💕
It sounds like an allergic reaction to Xtandi. Discuss switching to Zytiga.
someone had mentioned that to me as well. It’s been a long time but I mentioned that to my oncologist and he asked me a bunch of questions … I think about inflamed , joints, nasal passages , redness of something…. Gastrointestinal issues and I didn’t have those so he dismissed that thought for me. I’ve always wondered if he was right. At this point I’m kinda saving Zytiga for next , if I get there. Lol
TA, What is your take on Nubeqa?
It is effective. So far, only approved for 2 indications:
1. With docetaxel+ADT (triplet therapy) in newly diagnosed men
2. with ADT in non-metastatic CRPC
New indications are in trials. An enterprising MO can possibly convince insurance to cover it off label.
I am metastatic but have yet to be classified totally castrate resistant so this may not be an option...yet. but will ask MO
Thanks TA , I will mention this to MO at the end of the month. Hope to get back to full dose as soon as possible. Nurse practitioner did just call and said to quit the pushups. I did 110 this morn with no issues Haha
Hypersensitivity reactions with Xtandi are described by the FDA (see 5.3)
accessdata.fda.gov/drugsatf...
ncbi.nlm.nih.gov/books/NBK5....
You could request to change to darolutamide (an antiandrogen like Xtandi but with less side effects) or to Zytiga.
Thanks for the links. The first one does include upper respiratory issues including sinusitis. I could hardly believe that missing one dose could have such an effect on my sinuses. It is the best my breathing has been for a month.! I am still going to stay at 80mg until i meet with the MO which is indicated in that link or find a suitable replacement. Darolutimide and zitiga are on the list. It takes at least a month to get setup with a new drug so it is 80mg ztandi for now. I hope it is enough
Though my SE’s were milder than those you’ve described, I did not tolerate Xtandi well. After six months on Lupron plus Xtandi, I discussed with my MO who recommended a switch to Nubeqa (darolutamide) which I took with Lupron for the next 18 months without the troublesome SE’s I had experienced with Xtandi. My PSA remained at <.02 and has since last October when I took a temporary break from both drugs. Each of us responds but switching to darolutamide made a big difference for me and is certainly worth exploring with your MO.
Meant to write “each of us responds differently….”
You may find this link helpful too: cancer.gov/news-events/canc...
The most troublesome SE for me is fatigue. Do you find this a lot better on Daro?
Yes, the fatigue and lethargy I experience with Xtandi went away.
Thanks. I'll raise it with my MO but I fear NHS rules won't allow me to switch.
I had bad experience with xiandi(enzalutamide)They had aplutimide I could of used instead but the chemist said gets in to the head the same way.
So we went with chemo!
NHS Bournemouth.
All I know is I did chemo, now am recovering and feeling better each day away from chemo.
Enzalutamide xiandi was going to be a lifelong treatment and I felt suicidal and like an old man on it most days...
Everyone's different as are the possible side effects.
So no harm asking what else there is and returning to a treatment???
Thank you everyone for your input I will report back with updates,! Nothing here against xtandi and I am glad to have this drug as ammo!!
Your approach to stop and the symptoms cleared was wise. Now reintroducing at half dose then increasing is also wise. If intolerable symptoms return, even intolerable fatigue which is not uncommon, then declare that you are “allergic” to enzalutamide and insist it be replaced with another option. Abiraterone +p is a very good choice. At least as good and is inexpensive as a generic. Darolutamide (Nubeqa) is another excellent effective option to enzalutamide with lower adverse side effects, but is expensive.
Keep up the pushups! I used to do 100 but can only do 60 now. Yet once a week I do an outdoor “street circuit” that includes 6 sets of 60 pushups, inclined on bike racks and bus benches, 3 sets of 30 incline pull-ups, 4 sets of 40 knee high step ups (20/leg), 4 sets of 50 striding lunges. All during a 5 mile walk. Great to be moving outside.
Thanks for the confirmation of my plan. Im gonna stay with a lower dose for a few days and if comfortable increase to 120mg. Nice to have Zytiga as a backup plan . Im am not sure that Nubeqa is indicated for my DX right now.
Wow you do quite the exercise regiment. It does improve my attitude. I also do 120 deep knee bends and squats unless I have trees to cut and split!
Always listen to yourself, I f you can walk the wire then go for it ! I bet you will be fine dropping the dose to every second day! Quality of life sure does mean something!
A full dose 160mg every second day? Hmmm I hadn't entertained that idea. I wonder if there is an advantage to that?, for now its 80 mg daily. THANKS
I had a period of stuffiness/runny nose for about 2 months which I couldn’t seem to shake off.It was always worse at night.I asked my specialist nurse if it could be a Xtandi SE but she didn’t think they were related.Been taking Xtandi since July 21 and I started getting the stuffy nose about 18 months in.Thankfully things seemed to have resolved.
I did regularly check it wasn’t covid .Didn’t have the neck/shoulder pain you experienced, just the ‘usual ‘ aches and pains/ stiffness.
covid is less common than a cold. Flu is more dangerous than covid. You might have had a cold or flu. Check your blood levels.
Hi Rick... I started out full dose 11/2019, after about 2 months had a few adverse events ( both legs and feet swelling, took a break for several days, MO restarted me at 80mg. Heading into my 4th year. (Lurpon + Xtandi 80mg + Prednisone). Here's a link from Xtandi re: dosing for your MO. (80 can still be an effective dos 🙏 ) xtandihcp.com/dosing/dosing...
Hey fiddler, thanks , that gives me hope!
Interesting that you're on Prednisone, that's not usually indicated with Xtandi. Why were you put on that?
Yes got lucky, was put on it prior to the diagnosis of PCa to treat , what we thought was, PMR (polymyalgia rheumatica).
Stopping the Xtandi is unlikely to grant such dramatic relief that fast but you never know.
You’ll find a solution. Meanwhile don’t forget to get back to the 110 daily pushups since you’re feeling better.😀
I stopped Xtandi in attempt to control hypertension, two years ago. Lupron quarterly keeps my PSA <.1.
Very interesting! I am on half dosage of Xtandi and have neck stiffness and headache and thought that was caused by TMJ. So my SE problems may come from Xtandi instead. Of course my oncologist was no help, for as long as my PSA is down and remain low (0.007), he’s done his job.
I cannot absolutely tolerate a full dosage and have cut it to half, 80 mg, and the PSA is still holding. Thinking back it was a few months later I got all my TMJ problems, so your post came as a revelation.
I think you can hold to 80mg and see if it does the work as it did for me. If so there’s no point to go up to 160 mg and suffer more side effects.
the lowest dose, that’s effective, is the best solution. Higher dosage is often just more destructive to the body.
husband was given xtandi originally along with lupron. What xtandi did to him was crazy. He slept 85% of the day and when he was awake he was like classic late stage alzheimers and he ached everywhere. We didn't know what was going on. It wasn't until I told the doc that something was horribly wrong that he mentioned xtandi crosses the blood brain barrier and there can be side effects like that, he said to go 1/2 dose which was slightly better but not much so he was switched to nubeqa, which doesn't cross the blood brain barrier along with the lupron. He still had the lupron brain fog, which with his adhd makes things interesting but he had his mind back and he doesn't ache all the time and his sleeping had improved. I was totally pissed that he didn't discuss any of these possibilities first
There is a Zombi effect that goes along with Xtandi. My wife noticed it more than I and I absolutly hate that! I plan one discussing Nubeqa with my MO
That was kind of my main side effects on it.Scary thing is we may need to revisit it!!!
I’ve been on Xtandi for nearly 9 years now. About 5 years in the side effects reached a point that my MO (Sartor) recommended that I reduce the dose to 80 mg, that helped with SE’s and I’ve been on that dose ever since. And BTW missing one dose wouldn’t cause you to feel so much better, it would take several days to clear your system.
Ed
That shit was "Poison was the Cure" kinda gig w me. I used for 6 months. Put me in the ED for cardiac pain. Knife in back, knife in front, and vise around my rib cage. WTF. Heart looked great, complete work up, YAY! 2 days off Xtandi, the knives where removed!.
Currently taking. Lupron, Protocel, Zeolite, D3K2, Primal Greens, Balance of nature.
Always modifying for QOL.
Crispy
I’m with you Rick that was my finding also. Just one avoided daily dose and could tell a more of a refreshing day from SE. After finding out that experience I knew that wasn’t the way to keep the cancer in check. So now a steady 80mg and have less SE and a much improved QOL. I still need that nap to rejuvenate the rest of the day but way better that feeling suicidal or taking all my strength to get around. My next appointment I will be discussing Zytiga.
Consider Darolutamide/Nubeqa like others suggested. No side effects to speak of for me like on first line ADT, and maintaining very active lifestyle. Reducing dosage a little at 8 months in to see if this has any impact on muscle strains from exercise that seem very slow to resolve; but gotta remember we’re all getting older, too 🙂.
I've been on Xtandi since Feb along with Pluvicto. PSA down from 305 to 244 after the first 6 weeks. Before that I only lasted 4 sessions of Docetaxel, and I did not tolerate it well either, not to mention my PSA kept rising. But Zytiga was my kryptonite, reacted terrible to it. Major pain in joints and muscles. PSA went from 24 to 92 in less than 4 months. That's when they moved me to Docetaxel.
So now with Pluvicto and Xtandi, the pain is minut. Still taking a quarterly dose of Lupron, so the fatigue is really bad, I can't do much of anything very long. Even have to sell my motorcycle. Been riding for almost 50 years.
I had some experience that might be from Xtandi and joined an old thread. I never eliminated or reduced dose though:
CAMPSOUPS profile imageCAMPSOUPS
2 days ago
I'm experiencing this too. Been taking Xtandi for 8 or more weeks. I'm not sure what is the cause but got up to pee 2 nights ago and almost fell down. Then I vomited. The vertigo is better but I still cant hold down food. Neck is weak. Hard to hold my head up for more than 10 minutes.
Benkaymel profile imageBenkaymel in reply to CAMPSOUPS
2 days ago
Interesting. Was the room spinning too? I went back on full dose Xtandi on New Year's Day and have had no further incidences since so hope it was a one-off.
CAMPSOUPS profile imageCAMPSOUPS in reply to Benkaymel
2 days ago
My head was spinning. Still a slight amount of vertigo when I move my head quickly. I ate some plain grain bread toast about an hour ago and keeping fingers crossed no vomiting. Last night no vertigo but again its lurking slightly as I can feel it if I get up to fast. Vomiting has been consistent feature though. Except today only once so far in the a.m. before I even tried to eat anything. I'm sending a message into my MO now.
Glad you're coming along.
CAMPSOUPS profile imageCAMPSOUPS in reply to CAMPSOUPS
24 hours ago
Feelin much better today. The mild headache, weak neck, achy body, vomiting, and vertigo are gone. I ate something this morning that should be hard to digest (crunchy organic peanut butter & honey on toast and some milk ) and it stayed in my stomach.
Hopefully back to where I was which wasn't perfect to begin with. Since chemo ended last mid December my appetite has been off.
Here's the whole thread:
I have been on Xtandi since November 2023; this is in addition to 6 monthly shot of lupron. Xtandi brought my PSA from 4.1 to undetectable in a short period. Side effects have been mainly constipation, loss of hair, and some back pains and fatigue; but some of these were already there from lupron. Oncologist has reduced dosage of lupron from 160mg to 120mg; I am hoping to go down to 80 during my next appointment in May. I am able to walk about 4 miles briskly 5x a week, this in addition to my regular job keeps me fit. What I have learned from the wide diversity of narratives on this platform is that, we respond differently to the same medicine; as other warriors have suggested, yours seem to be a reaction to Xtandi needing the advise of your oncologist. Best to you warrior.
Yeah had a similar experience, i started on Xtandi November, was on it about a week, had different SEs to you, severe constipation, zero apatite, aches, headaches, i never get headaches, felt it was destroying me, so yeah, i had no problem, i just stopped taking it for about 8,9 days, SEs cleared up so i knew it was the Ztandi, restarted it at full dose, SEs didn't come back, psa dropped, but last psa started to go up, see what next psa says, might have stopped working now, don't think its cos i had a break, think it's more that meds don't work very well on me, my psa has peaked at 1678 got mets everywhere, diagnosed as terminal, so I'm not expecting to much from meds, doesn't bother me as long as I've got a good QOL, thats the most important thing to me.
For me if I don't drink a lot of fluid while on xtandi seems like my side effects are worse so I suggest drinking is much water and fluids as you can it seems to take away the side effects
Xtandi
Zytiga and Xtandi
Starting Xtandi
xtandi 
Xtandi + Niacinamide
