Just wanted to chat about Xtandi side effect. General fatigue I think we are all aware of but I would like to know if anyone gets back,neck/shoulder pain along with stiff legs etc. They all feel muscular joint pain. I have been on Xtandi for nearly four months having survived with Lupron alone for 8 years. My psa has fallen from 95 to 30 during the first two months. My GP seems to think discomfort is muscular and joint wear I am seeing oncologist next month. Another side effect is also my sleep pattern has gone from 7.5 hrs to 9. Any comment appreciated.
Roger
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Rogersw
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If you search the site, you'll find quite a few previous posts talking about SEs for Xtandi. It's something I too am very interested in as I started on Xtandi just yesterday.
first, Xtandi has given me 4 additional years of life … literally saved me from hospice when first diagnosed. However, I’m one of the very small percentage of users that experience the “ extreme “ SEs. . I experience the Xtandi zombie effects. I can’t walk 25 feet ( have to use wheeled chairs or a motorized etrike ) , I experience the super stiff long muscles from my rib cage down , my blood pressure, ekg train and blood sugar are trashed as well and require nearly constant attention and meds. Tiredness and joint pains and muscle pains are severe enough that I need opiate meds to manage them generally.
I wouldn’t change a thing , tho, if it risked my remaining time … and I’ve learned to live with this with many workarounds to improve my condition and circumstances. I’m good with it, it isn’t “ all that “. I have QOL trips to the coast and mountains with family, enjoy culinary delights and try to take advantage of the gift of extra life that Xtandi Lupron have brought me.
I sleep on a cpap and have good nightly sleep but only about 5.5 hours a night. My meds wear off and the discomfort wakes me up. Sleeping longer may be a result of the tiredness experienced from ADT, sleep is a good thing for most of us . My psa went from 1400 -1600 down to less than 0.1 … for nearly 4 years now.
Wow Brother, I had no idea that you had such severe SE's with Xtandi and a crazy high PSA! I'm impressed with your jovial, sometimes irreverent nature despite, maybe feeling like cr*p.
Prayers for you my Big Bro to "Live Long and Prosper" and to keep posting here too.
Xtandi failed for me after 2 months, previously Abiraterone only lasted 9 months.
Then had a 6 Taxotere rechallenge in 2020, that failed too.
Here I am now about to get an RO cons this Friday to see about MRI guided IMRT to prostate and perineum.
Hey, PSA went from 3.9 on 06/2109 to 9.5 in 12/19. Started Abiraterone in 01/20. PSA dropped down to 4.1 in May 2020, but still rose to 9.2 in 09/20 and started Xtandi.
PSA still rose to 9.6 in 12/20 and started the 6 Taxotere rechallenge on New Year's Eve Day. And now will have 17th Cabazitaxel this Friday and a Radiation Onc cons that am
Wow you are a super tough man. Guys like you really show what perserverence is all about. I know guys who really complain about sore nipples taking Casodex.
yayahahahaya yayahahahaya l …. Well , if you have sore nipples, you have to rub them doncha ? Yayahahahaya didja ever see Conan’s opening segment ? Just say’in.
I also have crazy BP, but that's from the L ureter being squeezed by the PCa in the surrounding lymph nodes. Have left kidney atrophy, but GFR and Creatinine are fine.
And Yikes about opioid induced constipation I won't say that ur full of sh*t tho
You are determined and also have a Happy Heart despite your travails. Others can learn from you my Big Bro.
And Yes gettin extra time on Earth to do QoL stuff is all worth it. I tell my pts that a #stageivpca diagnosis has a 29% chance of making 5 years, and here I am at almost 8!! I'm in Gravy time
Hi Rogersw, been on XTANDI Lupron for two months now and find that I have trouble getting out of bed which Lupron alone did not produce. Did not measure the hours but I find thg\at I am sleeoing beautifully in the early morning, Not getting all the pains, just a few cramps
Thanks for that London I use to do a fair amount of exercise whilst on lupron tennis’ cycling’ and walking about 4 miles but these are now seriously curtailed with tennis no more with cycling and walking limited to about two miles. I do have a community swim pool near me so I will give that a try (but it is so boring)
Weight lifting or calisthenics is the best option now, along with any cardiovascular exercise you can manage. I understand the boredom piece, but if you become less and less active boring will be attractive by comparison.
Most men who are prescribed Lupron Xtandi etc, are not really in the physical condition to handle the side effects. This is the elephant in the room (doctor’s office) that usually gets scant attention. The drugs extend life no question, but the price is high for those sedentary or with co morbidities.
Since statistically less than 15% of cancer patients over 65 exercise regularly, this is a collision course for far too many.
What we used to do doesn’t matter anymore. I’m sure you miss tennis, but the time comes when the old adage ‘exercise to play sports, don’t play sports to exercise’ goes from being a good idea to non negotiable. You can get back out there, but admittedly it will take considerable effort-through doing other things.
Exercise when older is already tough, and the drugs exacerbate it greatly, but it’s literally a life and death matter. I wish I could point to a easier path, but strength and fitness are by far the biggest predictors of longevity, and the quality of it.
I see similar side effects - but not so severe. I have gradually reduced my Xtandi dose from 160 to 80mg and in a week or two I get my next bloodwork. If that shows a simple continuous trend I will consider that - at least in my case, the standard 160mg dose is unnecessary high
Yes some pain seems common. Not sure if its bone or muscle or nerves. Exercise helps get rid of it. But it moves to other parts of the body too. Keep up the blood circulation seems the answer. 🙂🙂
When I started ADT treatment, I was on Eligard and Xtandi. I experienced the all the expected side effects with fatigue and hot flashes initially being the most frequent and obvious. I also had my PSA drop to undetectable and my T to under 20.
I also was experiencing the cardiovascular side effects and was hospitalized 3 times in the first five months with chest pains, including a mild heart attack. My oncologist moved me off the Eligard/Xtandi to Orgovyx as Orgovyx is easier on the cardiovascular system. I still have the hot flashes to the same degree but the fatigue is not as bad. And, most importantly, my PSA is still undetectable and T is below 20.
For what it's worth, I am being treated with the same Eligard/Xtandi regimen, post Radical Prostatectomy. Just short of two years. I stay as active as I feel I can. There's no doubt the ADT stuff is much harder than the Radiation Therapy or the surgery itself. I have told my Urologist that I thought the treatment would kill me with the SE's before the cancer. In particular I have had issues with my BP that seemed to correspond to the day I began taking the Xtandi med. My normal 130-ish/70-ish BP is now 160-ish/90-ish despite a good diet and regular exercise. I brought up the subject of Orgovyx and was greeted with "It's more expensive", case closed. I have had to resort to my PCP (Fam. Dr) to try to reduce my BP somewhat. Occasionally I get a reasonable BP reading with his prescribed pills: enough so that I'm not concerned about immediate stroke (which commonly runs in my family). I keep an eye on my kidney functions and "keep the wheel squeaking" with the doctors, just short (I hope) of irritating them and keeping it friendly. As to the hot flashes, I don't really care, they are nothing more than a nuisance: I have fans and towels everywhere. I told the Urologist no more pills unless absolutely necessary. My G/I had to fix my 3 ulcers and Barrett's caused (in my opinion) by all this treatment (aka, pills).
Nitefly50, The price of Orgovyx put me off at first, $946 US mo. the next week it was $900. ??? (Xtandi was $4000, I tried to apply online on the Xtandi website and was immediately denied when I clicked the "Do you have Medicare part d" box.)
Then i received a 3rd call from Wellcare, it's somehow tied into my Medicare part d, Orgovyx was now $156 mo. So I bought it. Now about 2 weeks later, Sept 23rd, 2022, the Pharmacist from UCI called me to tell me that Orgovyx had a Grant available and asked my permission for her to give Orgovyx my name and phone #, so i did. 2 days later I got a call from Texas to question me if I qualified for Orgovyx . I received my second 30 day supply a few days later. I'm waiting for the "hook", but none so far and I'm promised Orgovyx thru the end of the year, then I have to reapply. I also filled out the downloaded / printed Xtandi "freebie" application from their website, filled it out, gave it to my UO, I get my 2nd bottle today... A blessing indeed.
my Urologist's office helped me out with that one...Xtandi is a Schedule Tier 5 drug (I assume Orgovyx is the same) and Androgen Deprivation Therapy (aka hormone therapy) is an 80/20 proposition, like Radiation Therapy, for me. I would have been on the hook for 4K/mo. My Insurance approved their end (8/k/mo.). Fortunately I got past that pothole from the beginning. I did ok in life but didn't exactly have an extra 4k laying around every month. Such things are all or nothing as I understand it. I have to renew the grant each year.
Hello brother, Close to 90 days on Lupron. Started Xtandi 8 weeks ago. Shit put me in the E.D. on week 6. Wicked chest pains, started in the back and radiated toward the front chest. Anxiety attack set in ( Heart attack symptoms). Heart checked out fine, but Triyglycerides have triples. E.D. said must be muscular. Stopped Xtandi for a 2 week vacation, Chest pain disappeared within 48 hrs, (spinal compression) I believe. Heaven and Hell man. F*CK CANCER. I may restart at half dose, home from vacation now and flipping the coin.
wish I could sleep 9 hours 🤣. I’ve been on Ostia Bi flex now for several years ,it helps with the finger and shoulder lock up. Celebrex as well. Still don’t have all the range of motion but 6 years into Xtandi and still kicking
Husband is 9 years out from initial diagnosis. He is 76 now. Xtandi was a miracle drug until it WASN’T for him. He had all the symptoms of a stroke and the ONLY explanation docs could find was the Xtandi. He was on it for more than a year, before the event. Other than that, he seemed to adjust to the ordinary side effects pretty quickly. Since then it’s Nubeqa and the zoladex implant every 12 weeks.
my husband tells me, it feels as if you have ten pound weights attached to each leg. He has been on lupron for 10 months and xtandi a month. Cholesterol drugs seem to have the same leg side effects. a popular phrase among distance runners “ you don’t want to hit the wall” it feels like your legs are heavy and running on dense blocks, sort of like that, I am guessing.
I will be starting Xtandi today after Zytiga. I was planning to start with 1/2 dose and see how the side effect are. I was also going to add Gabapentin, but cannot find clear evidence if this is ok to do with Xtandi.
I've been using Gabapentin, for foot neuropathy for many years, along with Xtandi. No side effects that I can remember. Although, I am now starting to sttutteerr.
for me low dose bicalutemide side effects were bad. Particularly brain fog and fatigue. Did reduce psa frin 3 to 1. Started low dise xtandi and psadropoed from 1 to 0.5 and side effects more tolerable. After 3 months raised xtandi from 40 to 80. As psma scan showed some bony progression from year ago scan. Increase has not increased mild side effects.
In psychiatry the rule of thumb for meds has been “ start low , go slow”. Might not be a bad idea with these very powerful androgen modifiers
Xtandi kept me going for 7 years. Now that I am off everything I realize how creeping brain fog caused some bad decisions. Unfortunately no one talked about brain fog and I live alone so there was no one to keep track of my behavior. Also my PSA was never low enough, long enough to even thing about a vacation (though I doubt my doctors would have discussed it). Meet my RO next week to see about Pluvicto.
I exercised all through ADT and kept really active. With mets in my neck back and pelvis it would be hard to say if I had side effects from Xtandi or if it was just the mets... In any case I just keep keeping on and things are going well, at the moment.
Wow. I should not complain. I have been on Lupron since 2017 and added Xtandi in 2021. Except for a few hot flashes and fatigue/brain fog, I have no recognizable side effects. My PSA started to rise so I treated myself with doggie medicine and it went down by over 50%. I also take a bunch of supplements but I have been doing my own thing and still get around fine, just not like when I was younger ( am 73 going on 74). I will continue to partially treat myself because medical doctors are confined to their sphere of medicine and will not consider any other possible other treatments which may help. I also, for the most part do not eat any sugars, or pastas (except I cheat sometimes) I do not smoke or drink. So there you go and I enjoy life. Wish you well. Ken
Oh wow, sh*t that I don't think about - Sh*t cycles on top of all the other shizzle you go thru.
I feel so Blessed that my SE's are low, my QoL hasn't been impacted to the point of having to stop working, hiking etc.
I told a long time pt, who inquired how I was doing. I said that seeing my long time pts lifts my mood, and turning on the "Dr. Kam" persona with new pts, gets does that also.
Let's all do QoL stuff to keep our Spcle onirits up and chase the Blues away, at least for a lil bit
yayahahahaya good pun. Ain’t nudd’in to it my brother. Its all good as long as I’m smelling the daises and not pushing them up. Yayahahahaya. Eye on the prize, so to speak.
I’ve been on Xtandi since March along with estradiol patches which I had been using alone since early 2019. Psa has been nil since. I find fatigue to be the major SE. I dropped from 160 mg to 80 mg per day awhile back and it’s really helped. My biggest problem has been incontinence . I had an AUS a couple months ago and it’s starting to work but I still leak which I don’t understand. I’m working on it with my urologist. I see my MO next month to check up on Xtandi . So far I can’t really complain.
Hi guys 36 months here with Lu-177 in the middle. I peloton 100 minutes plus a week, and lift. I really cannot attribute any side effects . We all wish we had our Test. back but still flying, and work my ass off in the yard. Jog with a back pack blower around the yard and push myself..I am 70 this year. Headed back to India for another session of Lu-177. My personal choice over chemo. Everyone take care and keep moving the best you can... Blue Skies with an occasional thunder storm,,,,,Sky King and Penny ( woof)
Hi Roger - Raoul here , am in also in the uk , sussex and am on Xtandi full dose after initial sweats appear to have calmed down ! - notice weight increase around waist and moobs also as most appear to have no sex drive - no male hormones ! have been on since diagnosis for 1 1/2 years - PSA from 65 to 0.03 - confirmed spread through nodes to bone - hope I live like Kaliber as a minimum ! - about time we he had some cures for ALL cancers I think - we have some promising human trials - would love 15 years as a minimum - did not think I would ever say that ! also try to keep sugars low and no alcohol at all - shame ! - hope this is beneficial kindest Raoul - I think we finally have L177 now too !
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