My husband who is 69 has been in treatment for prostate cancer on ADT injections every 6 months for 8 years with no problems. However his PSA started to rise from immeasurable to 4,00 in May of this year. He was put on Xtandi 4x40mg tBlets per day. For 6 weeks all was fine, but the side effects have become ever more difficult. He is now suffering with awful fatigue, difficult to wake even though sleeping most of day and night, terrible taste in mouth, nausea and vomiting, headaches, constipation, no appetite, difficulty breathing, pains in stomach, legs and feet swollen, and just lately confusion, a trance like state where he does not know I am speaking to him, forgetfulness and clumsiness. He spoke to our Dr who suggested he speak to the consultant. Unfortunately his Consultant is on holiday until 31st August. Have spoken to his secretary who asked me to email his symptoms. I asked if his symptoms could be looked at by another Consultant, but she said I must wait until the end of the month. I am now beside myself with worry, and my husband and I have reached the decision that my husband halve his dose in the hope it alleviates some of his awful effects until he can get a way forward. Has anyone else been in this situation?
Intolerable side effects from Xtandi - Advanced Prostate...
Intolerable side effects from Xtandi
Hi grasscutters .... the bulk of people that use Xtandi have much less / more tolerable SEs .... I think it’s about 6 or 8 percent or so that experience the heavy debilitating SEs that your husband has. Unfortunately I too am one of that small percentage that gets hammered as well. I have pretty much the same exact SEs you are describing and more. I’ve had them for 22 months ...so far. There is another alternative adt treatment that includes the drug plus prednisone that may have far fewer SEs that he could switch to ..
Some of the guys here will describe that alternative drug for you ( brain fog here like your husband, I forget it’s name right now ). I don’t think you said but he is probably getting Lupron depot with that xtandi. Perhaps Zometa to reinforce the adt bone loss ? For me , my undetectable psa is the key. Xtandi is quite literally saving my life right now ... adding considerable valuable months to what remains of my time. It was very rough early on , but I’ve learned to tolerate it and even find “ workarounds “ past the side effects to return a semblance of near normal function. Most likely your husband will grow accustomed to those SEs to a degree and after long enough will become his everyday life reality and he’ll be able to look past most of it. For example , I’ve lost most of my mobility with Lupron Xtandi... I can’t walk more than 40 - 50 feet without turning red, huffing and puffing, and bp jumping to 215/110. My wife drops me off at the door at kaiser and pushes me to the appointments on one of those handy wheeled carts. Most major supermarkets have that courtesy electric mobility cart in the front of the store. The zoo rents electric mobility carts , for example. I have purchased an electric moped ... it’s specially modified for slow to accompany a walking person. My wife and I went for a very Smokey walk this morning .... I can easily drive 14 miles on the local suburban hike and bike trails just sitting in a comfortable chair. This is an example of a “ workaround “ I use to get past the heavy SEs. For me, absolutely nothing is more important than having the chance to spend a few more weeks or months with my wife and family. Yes I get my hinny kicked by SEs but I grow accustomed to them and they seem to be a small price to pay for a little more life. Right now , Lupron Xtandi has pushed me past entering hospice by 22 months ... although rough at times, Xtandi is working so perfectly that I wouldn’t change a thing or risk upsetting the extremely good remission that it’s providing. I feel blessed ... ( and mangled yayahahahaya)
This is just one take , my experience.... I frequently see guys on here that simply Just can’t stand those side effects , no matter what , and quit the treatment. I absolutely “ get it “ believe me ... it’s just going to be a matter of personal choice that we stage 4 guys have to make personally.
Herze a hint: Vicodin pain management has a dramatic improvement on my overall adt discomfort and gives a little energy boost too.
Best wishes for you and your husband grasscutters, I hope sharing my perspective may be useful in some way.
💪💪💪👍👍👍🌼❤️🌻🌸🌈
I have no experience with Xtandi, but as I was reading your post I was thinking those symptoms sound like Covid? Particularly the shortness of breath part.
Here is the list
cdc.gov/coronavirus/2019-nc...
Yea ...no kidding huh ? I always have fun , since COVID, when I enter Kaiser and they ask me the screening questions , I kinda start laughing when they ask about that or try to read my temp and it always comes out 94.8 or 95.2 and I’m dripping / drenched with hot flash sweat yayahahahaya.
I always say , well , not anything new , anyway, and laugh. I’ve talked to a lot of guys here that experience the adt shortness of breath with much physical activity. I’m sure there are many contributing factors too ... like adt has caused my cardiac qrs train to look like a pong game, and wildly erratic bp and blood sugar. Serious muscle wasting, major weight gain etc. My first medical recommendation immediately after being DXed was to get me into hospice fast. I was VERY sick and knocking on the door. My bloodwork was shocking looking .. alt and calcium off the chart high, most of the rest “ well “ below the green zone ... and being tested every two weeks, every data point marching down toward zero like little soldiers. Stuff like exercising ... far out of the question. Adt has caused me to have to walk all hunched over and struggle a lot to walk , shuffling my feet etc. ... Spinal , knee and foot met bone damage and muscle stiffness major players. I used to drive around on my e-trike and get off now and then and walk around to try to tone myself up , little by little, but my bp instantly jumps to alarming levels ...215/110 common and higher, the risk of stroke so high ...it not worth the risk. I walk around the house a bit ...all totaled ...during the day, sometimes out in the yard too ( hitting 110f here every day right now ) ..
It is what it is... we just have to play the cards that we are dealt ... juggle the incidentals ... and keep on keeping on. Yayahahahaya.
Peace brother 💪💪💪✌️✌️✌️
Kaliber, I am so impressed with your drive to stay out and about! With Covid inertia, sometimes it feels easier just to give up. My husband has found a tryke, a recumbant bike, very helpful. It locks so he can get on and off. And it is so much more stable than a bike. I love the moped idea. That way both people can go out together.
Keep kicking and thanks for post. PS my husband has been on xtandi for almost 3 years now. He did not have the severe ones that were described here, but some of the tiredness is just part of the new normal, and some has gone away.
Thank you NWLiving , I appreciate your kind thoughts. Went out on e-trike this morning , drove about 16 miles on it ... air here near danger level with thick dark forest fire smoke. Still nice to get out tho. Your trike is great if he has physical abilities to pedal it. Great exercise. Imagine that trike , kinda, with an electric motor and moped body yayahahahaya called a ew-38 on Google. With a bumper hitch lift you can take it to the zoo, supermarket, national parks, city parks, hike and bike trails ... beach / ocean. These things are a ray of sunshine when your mobility suffers from adt and PCa. Helps you maintain a sense of independence longer.
Hope you have a great weekend for you and the hubby , duck those COVID bugs yayahahahaya.
Best wishes 💪💪💪✌️✌️✌️🌸🌼🙂🌻❤️
🤙🏽❤️
🌻🌼🙂🌵🌵🌵❤️
Well buddy, I went into Kaiser today expecting to get that gaping hole on my forehead stitched back up and be done with it, finally. Looking to putting that mess behind me and moving on to other things ( like PCa maybe yayahahahaya) yayahahahaya. ......... the plastic surgeon removed the packing and dressing and said “ that looks great , good job of wound care “ .... looks healthy , healing coming along great .... yayahahahaya you know it’s just not going to be THAT easy huh buddy ? So she says “ keep up the good work, come back in and see me “ “ IN A MONTH !!!! “ yayahahahaya I think I almost fell on the floor when she said that yayahahahaya. Another whole month ..... dang nab it yayahahahaya. Argggghhhhhhh ..... 😂😂😂😂😂
☹️☹️☹️☹️🤪🤪🤪
I’d go get drunk but I can’t even have booze with the antibiotics I’m taking ...guess it’ll have to be a sarsaparilla yayahahahaya. You and the crew have a nice COVID free weekend buddy.
Crybaby!!! 💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪💪
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 08/22/2020 12:38 PM DST
Dear Sir! Make it a sarsaparilla!
I started Xtandi after Cosudex stopped working afte 13 months. I thought it was wonderful. My psa dropped back below .oo1. I had no side effects and had wonderful energy. I was power walking 5-6 km per day. However after 4 months I had a seizure after a strong power walk. Cat scans showed no brain problem. However, oncologist diagnosed it as a rare side effect of the Xtandi. I changed to Zytiga- Aberiterone and Prednisolone. I had 3 months of some digestive upsets Which the oncologist put down to the Prednisolone and he told me to cut back to to one tablet daily for a few weeks to let that settle. It worked and I have been fine for 28 months. I am now 80 And I aim to walk 8000 steps per day. Over the last 6 months my psa has slowly risen to 0.3 and I hope this rise continues slowly.
Sounds like you are doing pretty well with Zytiga instead of Xtandi. Being able to walk and be mobile is a real good thing too, keep that going as much as you can .... you’ll Really miss it if you lose it. Making it to 80 is pretty good fortune with this mess too ... I’m 74... 80 seems like a long ways away.
I hope you keep on keeping on .... that psa is pretty low, I’ve seen that people can have psa in the mid 500 and increasing and still hang on for years and years without additional treatment. Best wishes brother, thanks for contributing.
💪💪💪👍👍🙂🙂🙂🌼❤️🌸🌻🌵
We all can react differently to any treatment.I suffered with double adt . Lupron & tak-700 Until an orchiectomy allowed me to halt the Lupron and I too needed to cut my tak down from 6 pills to 4 per day. That alone made a huge difference in side effects . But I’ve Ben PSA.014 .. I don’t see cutting adt with a high PSA. But I’m no doctor. Had all of the described side effects on spades. I can relate to his position. I’m sporty he’s suffering so much . Take care of yourself while he suffers. We don’t need care givers going down with us .🙏
You might get some ideas of possible Dose Modifications, Side Effects profiles among 800 men in the original Xtandi Study, and other information in Sections 2 and 5 of this USA prescribing document. Perhaps also use it to organize your thoughts/symptoms tracking records between now and when you do consult with the prescribing specialist.
accessdata.fda.gov/drugsatf...
Some of the other symptoms described might also be associated with certain heart and circulatory problems, and not just the Xtandi. I'd want to keep an open mind about causes, and report all these symptoms to my doctor(s).
Hi Grasscutters, I'm on Enzalutamide (Xtandi) 4 x 40mg tabs per day with a "support" of a Zoladex injection every 3 months. I've been on Xtandi now for a little over 2 months & the only side effect I've had to date is tiredness almost every waking minute of every day.
I'm not working (retired due to this thing) so I currently sit at home and twiddle my thumbs (I'm in Melbourne Australia that is in Stage 4 lockdown due to Covid19).
I can't give any other comments other than support for what your husband is going through.
Hope things turn around and there is reduced / little SE's going forward
Hi I am also stage 4 on Xtandi-3 pills and Zolodex injections every 3 months. First dose of Xtandi - 4 pills casued me to fall, Recovery was tough as I had swollen kknees and pain for 3 months. Since then - one year and 4 months have passed without issue. Recently I am getting stomach- side pains. I have done a CT and Ultrasound that show no significant changes yr/yr. Pain persists. I take some advil to help with the pain. Xtandi has kept PSA low, with a slight increase showing on last 2 sets of bloodwork. Just wondering about next steps if PSA continues to rise and stomach side pain gets worse.
My husband had similar side effects from Xtandi plus a seizure like event just before a fall. That was two years ago.
We should have insisted on Zytiga first (abiraterone) as that was much easier for him to tolerate.
Half dose of Xtandi had less side effects but became less effective. He only got two years from Xtandi and it took a toll on him.
I take 80 mg a day now after starting on 160 mg Would have preferred to be dead on 160 mg as fatigue so bad. What no one told me is that the anti coagulant Chloiprogel doubles the effect
of xtandi and could be contra indicated. My treating Drs did not know As I am Aussie doctor read the literature and going well on half dose so check incompatibility with oth meds. Also have had had pharyngeal symptoms and Drs unaware this is side effect. Don't rely on Drs do your own research. Good luck Aussie Bill
What do his blood tests indicate? Usually when taking Xtandi or Zytiga with ADT the docs like to watch what blood tests show on many more things than what are tested in men with no Pca problem.
I had Lu177 for first 5 months of 2019 up to May, and began Xtandi in April 2019, and am still taking it and I can't say what side effects I am having from it. Its ceased to work to reduce Psa, but docs want me to keep taking it to boost PsMa expression while I have additional shots of more Lu177 this year. Before winter weather got so cold here I did some very good cycle rides with average speeds that indicate that no part of my present Pca treatment with continuing ADT + Xtandi, and more Lu177 is slowing me down as an old athlete of 73. So I don't know why some get bad SE from Xtandi while I don't have any.
I did take Zytiga for 8 months, and that had some worrying SE on heart rate, but I managed to keep cycling 200km a week regulary. In hot summer weather I had to set out on rides at 7am to get home by 10am to beat most of the heat, because I felt some strange things happen as I cycled up hills. 3 out of 10 listed SE for Zytiga are about heart problems, but I am fairly fit, and have kept fit since 2 years before Dx in 2009 at age 62. I can only suspect that my fitness levels have minimized all listed SE that are on drug information literature.
I've has hypotension ever since I began ADT. Its where I may spend an hour or two at my laptop keyboard typing to all you good ppl and then get up for a cup of green tea, and my heart races and I get almost dizzy for some seconds, and I have to bend over while standing and breath hard and it eases the bother. It never happens when I am on my bike. Docs have zero idea why this stuff happens. My blood pressure and all blood tests look great, apart from Psa rising sometimes.
Hang in folks, and gentle exercise may be good for all of you.
Patrick Turner.
Wow. There is a nurse pharmacy on line at Xtandi all the time. You might try calling them and talking to them about the issues. Have a complete list of meds and stuff h e is taking . My pain meds were interfering with the meds at first. Good luck warrior. 🙏🙏🙏🙏. Think the number is 800-486-2668.
I’ve been on Xtandi for over 5 years now. For me the SE’s were cumulative, after a couple of years I had more cognitive issues than usual, a sickly feeling and fatigue of course. Doctor Sartor, one of my MO’s recommended reducing the dose to 80 mg or a half dose.
That helped quite a bit and it’s is still effective at controlling my PCa. Many men still respond well at lower doses than the SOC dose of 160mg.
Ed
Hi grasscutters. My husband was on zytiga and the symptoms you describe are almost the same as what he experienced. (He didn’t have nausea or vomiting). We went to the doctor multiple times and were told it was probably the prednisone. Since he has previously had that without incident we knew it was zytiga. We cut his dose to half, still keeping his psa low, but it didn’t remove the side effects. Finally, after going to multiple specialists for the side effects we decided even chemo would be better than this and he went off the drug. I was afraid he would fall and break something. I was no longer letting him go anywhere alone. His daughter was afraid we’d have to get care for him. It took just 6 weeks to see a dramatic turn around. I remember he told me a joke and I just cried with happiness that I had my husband back. Yes, his psa rose. He’s at .2 after 9 months off from .001. We recently changed oncologists (since his original oncologist insisted he should go back on zytiga) to a doctor who understands the balance of treatment vs quality of life. We are hopeful to try something new when psa gets to 2 and we are able to get an accurate scan. It was a really tough time. I empathize with you so much. What really helped was when my husband’s head cleared and he made the decision he couldn’t go back to it. I hated making decisions alone without his input and without support of his doctor.
Thanks for the information. I have fought against prostate cancer since 2008 and stage 4 metastases since 2012. I am now 74 years old. I was on Lupron( 3 injections , 90 days apart, with with bicalutimide pills), treatments three times in 2012, -14, and -16, then took a four year break from hormone treatment from 2016 to 2020. My PSA rose from <0.1 gradually over that four-year period to 35 last June. New Hematologist/Oncologist this June put me on Lupron shot every 3 months with Xtandi pills 160 mg per day since July. PSA has fallen to 0.8, 2 weeks ago but we expect it to be lower next check in September. So I have been on Xtandi for over two months now and I have no significant side effects at this point. I do seem to have need for more sleep, which I attribute to other reasons, but none of the side-effects list you give:" awful fatigue (no), difficult to wake (no) even though sleeping most of day and night(no), terrible taste in mouth (no), nausea and vomiting (no), headaches (no), constipation (no), no appetite (no), difficulty breathing (no), pains in stomach(no), legs (no) and feet swollen (no), and just lately confusion (no), a trance like state where he does not know I am speaking to him(no), forgetfulness (no. maybe a little) and clumsiness (no, maybe a little).
In general, the plan is to take Lupron shot every 90 days, with Xtandi, until "no sign of cancer", which I interpret as <0.1 PSA. Hoping for that in September.
I appreciate your information and will be on the watch for the side-effects. Maybe it comes after extended use, or your husband is allergic, or something like that.
p.s. The Xtandi lowered my testosterone to 3, whereas the bicalutimide lowered it to the low 200's, which I think is significant in lowering PSA. So far I give Xtandi two thumbs up.
Hello grasscutter,
Been on Lupron/Xtandi for 42 months now. Brutal. I am constantly thinking I want to stop but then I look at my wife, kids, grandkids and come to my sensed. I do not have side affects nearly as bad as he is though. Maybe he should try Zytiga?
If you are non-metastatic, you might want to check out Darolutamide, sold under the brand name Nubeqa, an antiandrogen medication which is used in the treatment of non-metastatic castration-resistant prostate cancer in men.
I read that it doesn't pass the blood/brain barrier, unlike Xtandi and Zytiga, thus causing fewer mental/fatigue effects.
Due to discombobulation, I quit 1/2 dose Xtandi for Zytiga/prednisone, but I'm just as mentally/fatigue messed up or worse on Zytiga. Unfortunately, I'm metastatic.
Can anybody else here comment on Darolutamide?
My dad was on xtandi almost left him barely able to walk to sit or stand confused sleeping all day and night I called the makers of xtandi and they said take him off clinical trials showed they had a few patients with same symptoms our doctor didn’t hear of any complaints such as my dads anyway we took him off after 4 weeks dad can walk and sit and stand and cut his grass so Not all doctors know everything follow ur gut!! He has been off xtandi and feeling like his old self again what the next treatment will be no one knows
Our exact experience! The Doctor still said it was a result of the cancer, and not the drug. He is now back to normal after stopping the drug.
I forgot the doctor even suggested it could be my dads heart I said he had a complete physical a few weeks before I told him of the side effects they push these expensive meds yes they work for some but now everyone thank u for telling us your story 😊🙏🏻
Sometimes the patient knows better than the Doctor.
After Xtandi is stopped how long do side effects normally last? The half life of Xtandi is 5.8 days which means that it should be totally out of your system in about 12 days. Is that what most people have experienced? I was on Xtandi for only 7 weeks and had to stop because Xtandi made the methadone I am taking to control my restless legs syndrome (RLS) totally ineffective. This led to almost no sleep for those 7 weeks plus the RLS symptoms also moved to my upper body by late afternoon. It's been the worst 7 weeks of my 77 years! I started Xtandi because the Lupron I've been on for the last 5 years started to lose it's effectiveness and my PSA started to rise. I'm experiencing many of the withdrawal symptoms that others have written about here. I wish my oncologist would have warned me about these withdrawal symptoms so at least I would know what was casing them. My oncologist is now switching me to Zytiga plus prednisone. Neither of which are contraindicated with methadone. I hope that's the case. Thanks for any advise you can lend.
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