Following failure of Zytiga after 3+ years I have just started taking Xtandi. I'm having some issues with the side effects or what I presume are side effects and wondered how you guys have dealt with them. Mostly extreme weakness in my legs to the point of struggling to get up out of a chair. I've also seen an increase in hot flashes and swelling of the feet and ankles. I've just been on Xtandi for 3 weeks and I'm interested in any feedback as to how long to expect these to stick around.
I also have had my first dose of Xofigo and second dose of Xgeva. Any suggestions and feedback are appreciated.
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Kentucky1
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My husband had horrible side effects while taking Xtandi. Like you, he became very weak and could barely move....slept 90% of the time. His doctor took him off the medication after 5 weeks. Others on this site who also experienced extreme side effects asked their doctor about decreasing the dose from 160mg to 80mg and that seemed to help. Maybe that would work for you too.
I do pilates once a week, try to get 3 sessions of resistence training with Bowflex weekly. During the summer try to swim as much as possible. I also do a weekly session with a MAT trainer. I have progressive MS , so that often throws a wrench into my activities.
Your situation is challenging no doubt. Try to increase the training intensity and frequency of the legs. Heavy weight not necessary for great results. Even adding wall sits to failure and bodyweight squats may solve your lower body weakness issues.
Did you taper up the dose? My husband was taking Xtandi last year and he was told to start with a small dose and build up slowly to 4 pills. He did not have significant S/E. The drug worked effectively for 5.5 months.
What type of treatments are your husband on now. I have just started my third month. PSA when down from 1.09 to .97 in 30 days. My next PSA check is in October.
Hi after the resistance to Enzalutamide, the hospital suggested trying radiation to the right pelvic hemisphere on the basis that the bone scan showed mets there. The radiation was done in March. It did not stop the PSA rising and by June we did a PSMA F18 scan privately which showed that there was bilateral met activity in the hips (even on the right side where radiation was given). So on 17 June Docetaxel chemo infusions started. Three done so far. PSA is 356 last Thursday but the MO is hopeful that this is going to come down. If the 4th infusion does not show significant reduction, I would like them to change to Cabazitaxel (hopefully with Caroboplatin added if NHS permits it). To do Lu177 treatment we would have to fly to India and do it privately.
I’ve been on Xtandi for 5 years coming up in October … and I’ve been the ( un ) lucky poster child for SEs to the point I have to use an electric trike to get around much. It has kept my 1400-1600 psa down to undetectable. I’ve got no complaints tho … I prefer life over death anytime. My first offer of care was inpatient hospice ( diagnosed very late ) Lupron Xtandi have save me from hospice. It’s been difficult but worth it to me.
Thanks Kaliber, considering your doc's first recommendation of care, you've done really well, but also suffered with those bad SEs. I hope your PSA stays low for a long time to come.
Thanks. I wanna be like larry_dammit … he’s cruised past the 16.1% percentile mark and is going strong. I want to do that too , and keep on going yayahahahaya.
I may be starting on Xtandi soon so am interested to hear about the SEs experienced and yours sound quite severe. From what I've read, two important points are that you should ramp up to the full dose slowly, e.g. 1 tablet per day for a week or two, then 2 then 3 then 4. Also, it's important to keep up regular resistance exercises (weights) to maintain strength. I guess I'll find out if these help me if/when I start!
Hi Kentucky. For what it’s worth I’ve now been on Xtandi for 3 months following failure of Zytiga after only a few weeks. I can report that my PSA is dropping and side effects are fairly minimal Yes I have a fair amount of fatigue and think early on a bit of swelling on my legs and only because you mentioned it my legs are weaker I think but then I’m 75 and have also had radiotherapy on my hip 3 months ago. Now that steroids have disappeared from my daily intake my skin has improved no end. Hot flush are also very rare and weak. Hope this helpsBest wishes
Hi, I am 59 yo, on Xtandi 24 months (and Differelin and RSO 8 years, had Docetaxel 6 x 28 days cycle, 4 years ago, from time to time - when it is necessary taking Zometa, but not since Covid 19. Not vaccinated). I learned to live with hot flashes that are constant all 8 yaeras long (hand fan, shirt made from towel, etc), so I didn't find any increase in that field when adding Xtandi to Differelin. Weakness is present, but it is only in phisical segment of me, and in the same time the soul is devloping more strength. For phisical activities I practice walking with my dogs 2-3 times daily, during summer swimming 2 weaks, regular housekiping work with my wife, grocery, cooking, traveling, sometimes light exercise, etc.
Only problem that occures to me with adding Xtandi to Differelin is that I start loosing muscels accros my whole body, so in corelation with that loosing weight (now 73 kg, 186 cm), despite having exelent apetit and eating a lot. I don't know how to deal with that (I am vegan last 6 years).
In my case, when starting Xtandi, PSA dropped significally from 60 to 5 in first 4 - 5 monts, but than start to rise slowly and now is 37. I added (on my own) a Metformin and Statin a yaer ago to my daily therapy.
Wish you good spirit and succesful and fullfield life.
About the only thing that is constant with this disease is the incredible diversity in individual reactions to treatments. I've now been on Xtandi for 11 weeks and my PSA has dropped from 39 and doubling every 3 months to 0.08. With that great outcome I'm willing to tolerate just about anything but so far I've only experienced fairly mild side effects. Initially I had a possible allergic response, fatigue that put me to sleep most afternoons and more intense but not more frequent hot flushes. I now take the capsules later in the day in the hope they will help me sleep at night and the allergic response never went beyond red spots from my feet to my chest. I'm 79 and my MO put me on the full 160 mg per day from day one.
My dad had lost his appetite with the full dose of 160 mg Xtandi. He has since got the half dose (80 mg); his SE is minimal (with hot flash) and psa remains undetectable.
I was actually on dexamethasone when I stopped Zytiga. I had swollen feet and ankles on prednisone 5mg twice a day. The switch to dex didn't change much. So sort of a taper 10mg Prednisone to dexamethasone 0.75mg to nothing. Was off for a couple of weeks and the swelling subsided, then has returned with the Xtandi.
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