Started Xtandi about one week ago and i think i have most of the side effects listed. Extreme fatigue with brain fog kicks in within 3 hrs along with joint pain and miscle pain. We dont have stairs at our house and it was discomforting when we went to some friends house and couldnt make it up the stairs at their house. My right knee was so weak i coldnt push myself up with that leg. It always had a little weakness since i broke my ankle about 4 years ago. The fatigue and brain fog seems to start to leesen about 11 hrs after taking it. Anyone else have thse sode effects? Thanks in advance. God bless to everyone in this group.
Thomas
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Tjc1
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My husband started Xtandi 14 months ago. Have you been taking it in the morning? We were told it really helps to take it before bedtime, and I do think that is the best advice. It's tough, with the stabbing pains and general weakness etc. My husband walks 4 miles a day to keep his strength and endurance up. Be sure to exercise. As they say, inactivity breeds inactivity. You have to force yourself. My husband was diagnosed at age 57, G9, extensive mets including his liver, and is doing very well. He has been through chemo twice, but Xtandi has really brought everything to a halt
Thanks Betmar for the reply. Yes i do take it in the morning. Maybe should switch to like 7pm since it takes 3 hrs to wipe me out. I was walking regular till winter hit hard and i do it when weather permits. I know it helps.
Yes I had to move the time to evening ,that helped me as well. As someone else said. Get up and walk or exercise some how. It settles in my lower back and hips if I set very long.
I’ve been on Xtandi 4 years now. After 11 months (and a greatly reduced PSA) my oncologist and I discussed options to help with the overwhelming fatigue. We moved to taking my dose at night and dropped the dosage from 4 to 3 pills. These things did help a bit. But make sure you discuss with your onc before making changes.
Also- the following has helped me:
-getting out for those daily walks
-my days are somewhat mapped out based on how I know I’ll feel at certain times of the day. For instance, my walks are in the morning when I’ve the most energy.
-I take a nap for an hour or two each day.
-Acupuncture, I tried this a couple times and it helped. However, the benefits were short lived. Maybe a day or two. I stopped because of cost and time/travel constraints
-The acupuncturist also recommended a Chinese herb called Si Jun Ti Zang (4 Gentlemen Formula) I get mine from a company called TCMZone which is the same company the DOM uses. 1 packet 2-3 times a day in 6 oz hot water. This helped more than the acupuncture, cost less and I can easily make this up at home.
Again- discuss with your oncologist.
Interesting Factoid- I live in the Santa Fe,NM area. For those not familiar with Santa Fe, we refer to it as Fanta Se. It’s very woo-woo here. IE spiritual, cosmic, alternative. Anywoo (🤣), the cancer center has a Holistic\Alternative center associated with it which I utilize. One of my groups had a presentation by the DOM from the center and he said they have the only Chinese Herbal Pharmacy in the US that is part of a cancer center. I thought that was cool.
Let me know if you’ve any questions for me. I’d be glad to answer them as best I can.
Xtandi whipped my ass too! The fatigue was darn near paralyzing! I had to take small vacations from it. On 2 weeks off 2 weeks. It’s so effective on the PSA it’s hard to not at least try to stay on it
This is my second day on Xtandi. I guess side effects haven't kicked my ass yet. Been taking them in the morning as i'm worried Olanzapine ( which I take at night ) will clash with Xtandi.
I've been on Xtandi 2 0r 3 wks. I was not just tired but so exhausted... started on two in morn. I believe Dan and another on Xtandi mentioned taking it at night which I now do. Dr. wants me to only take one pill for awhile. Yes, your description of fatigue was very true...near paralyzing.....I will mentionOff and On to my Oncol. Good Luck to you!
Here's my story. Everybody's different, of course.
I hope you start to feel some "adjustment" to the Xtandi in the weeks and months to come.
I'm 69 years old and have been on Lupron for 4 years and 2 months, and on added Xtandi for 14 months. My tendency toward fatigue increased when I went on Xtandi. I can still "do stuff", but my body just doesn't "want" to do it. I do get outside and walk, but my pace is slower than in years past. I take my 4 Xtandi capsules later at night.
(I may also be affected by some other meds I take. Lowered blood sugar from Metformin that I take in the morning. A slowed heart rate from a beta blocker that I take daily for episodic atrial fibrillation. A modulated heart rhythm from another drug I take twice a day in relation to the Afib.)
No wonder I feel fatigue sometimes!!
(Beats the alternative of not being treated for progressive conditions, though.)
We are flexible, resourceful creatures. I do things with more physical awareness now. I plan for pacing and assistance and "working smarter not harder" for certain tasks. I ask for help with some things, and break-up other things into achievable smaller steps. I defer or let go of some things that are no longer easily within my capabilities. Some of this process has involved coming to terms with my new reality, and grieving over the loss of some of these parts of my former self, and capabilities, and roles in life. Not always easy. But, overall, it has helped to admit these limitations to myself and others near me. In some ways, the "slowing down" has also brought some moments of relative calm, too. I used to just run up and down while pushing my lawn mower, for example. Now, I walk it slowly, and actually enjoy the little cool-down rest I sometimes take when about 1/2 way through. I am grateful to be doing as well as I am, so far. Tomorrow is not here yet, and I have no doubt that the dealing with changing capabilities and symptoms will be a continuing part of my life.
I have only been on Xtandi for five weeks, but on the advice of my oncol I take it just before I go to bed. I did suffer from brain fog and fatigue for the first three weeks. I have now upped my exercise and feel I have more energy, good luck.
Thomas. I take 4 pills a day. Going on a year now . Doctor told me to take glucosamine twice daily , took a couple of months to get the joint pain down to fair, also take Celebrex for the old back damage. Note. Doctor had to change the pain meds when I started. On ms cotin ( morphine) twice a day and always carry dilaudid as a booster. Funny how yes I had almost every problem listed but getting better Hope this helps
Been taking Xtandi for 2+ years now. And yes suffer from fatigue, brain fog, muscle/joint pain etc. I always take in the evening before bed and sleep very well however there's definitely carry over fatigue next day. I excercise daily, eat a healthy diet and pace myself, I usually end up resting for half hour or so before dinner, but tend to try and stay active during the day. As for effectiveness, my PSA remains undetectable and recent scans are clear. Not bad for G9, multiple mets to my bones and nodes, hope it holds.
Hi Thomas! I have been on Xtandi for about 5 months now, in addition to Trelstar ADT. I had a 30 day followup with my urologist and oncologist after I started the Xtandi. They suggested 2 things: cut back to 2 or 3 pills a day, and change from night to morning. We discussed it for awhile, and since it had only a month on Xtandi, I opted (with them saying it was ok) for 3 pills a night, reserving 2 pills a night and a test of taking it in the AM for later.
So far, the 3 pills seems better, but I still need a LOT of sleep. At least 12 hours a day. My moods have improved which makes my wife a happier person. (Happy wife, happy life!) I walk several days a week, sometimes mixing in some jogging. (I miss real running - I did many races including one marathon and several half marathons.) My back does not permit it.
I do still get mild nausea when I eat. At least that is helping me lose some weight. Looking on the positive side here
After reading the other comments here, I may try moving my Xtandi pills to earlier in the evening (already have moved them back an hour) to see how that goes. If it wipes me out, I will cheer as I have trouble getting to sleep.
So, I strongly suggest talking to your med team about lowering the dosage, and getting what exercise you can. Walking, stationary bikes, 12 oz curls (beer!) help me out. But only one curl a day,
Best of luck, and please let us know how you make out.
Started Xtandi 14 months ago, brain fog is almost gone not quit. Muscle loss was real bad to start, seems to be getting better, the longer I sit the worse it is as it seems to settle on my hips . Walks help, live in a 2 story and that helps. Joint pain in the hands is real as well as the joints seem to lock up. In short about everything that they have on the warning but it is getting better and keeping the PSA down Larry
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