Since starting Xtandi~~my story..... I started out okay the first month...the second got worse...went on a 22 day holiday in Europe anyway, but now that back... I'm finding I am exhausted almost all day....sleeping well, basically(with just melatonin) waking 3 or so times to pee...but getting back to sleep quickly...
but I am exhausted all day ...having to push myself to do anything. I KEEP pushing...walking dog...housework...cooking...gym...etc. But I am falling into the bed 2 or 3 times a day for "rests" that turn into full "coma like" sleep for 1/2 an hour to an hour (sometimes more). I feel like I am one of the "walking dead"...I still look good and go through the motions of life, but everything feels like I'm in a fuzzy dream and I should be laying down sleeping instead of walking around. I do not wake up from naps feeling very refreshed...can always just go back to bed...but keep pushing.
The other thing is my feet (and legs) ....and hands are hurting bad. My hands have a new thing for me....trigger fingers. I have had it in my thumb for the past 2 months. I read about it and it says it generally goes away in a couple of weeks...it's excruciating to open or close my finger...so my grip in my left hand is painful and weak. I get it in my right hand over night..but it seems to get better though the morning and rest of the day.
Starting to think I am going to have to lower my Xtandi dosage from 4 pills down to 3. My oncologist doesn't like this idea. PSA has gone slowly down every time it's tested since doing Xtandi...finally, just reached 0.96. First time it's EVER been below 1 since I did Radiation/Hifu/Chemo/Lupron/Provenge.
Anyone else with these side effects...especially the trigger fingers? I am going to my Oncologist on Friday and want to know how to broach the subject with him. They hate hearing about side effects.
p.s. me in front of Shakespeare's home. It did seem like my energy level was better while on holiday...but since we were on a motor coach...there were naps 2 or 3 times a day while we drove through the countryside of England.
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greatjohn
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John, That is a great response! Are you doing the xtandi in the evening a few hours before bed, to prevent fatigue side effects? I wonder what the Oncologist thinks about giving 5 mg prednisone to see if that helps.
Bottom line, if you need a nap take one, all the best.
I've been on Xtandi for 1 year and 10 months, on top of Lupron for 58 months. I have a constant background level of fatigue, and a general loss of strength and stamina. If I need to sit down and rest for 5-10 minutes, ... I do it. Have also hired some services people to do heavier work around the house. Have not had any trigger finger symptoms or other pains. Don't take intentional naps, but do drop off sometimes mid-afternoon or later in the evening. I get sad sometimes at my now being less able to do physical things that I easily did before. Other than that, the Xtandi treatment is still working well.
Great results Charles...and it looks like the lupron lasted a number of years for you...I became castrate resistant very quickly so all this is hitting me quickly.
hmmm...well, after returning, I felt tired a couple of days...then had a couple of good days, so I feel I was over the "jet lag"....but perhaps. We came back last Sunday (the 2nd) so it's been almost 2 weeks. Thanks!
Shoot Guys. I have constant fatigue and I am still on Firmagon and Casodex (4 years now) so I can only imagine what awaits me when I am forced to take Xtanti and/or Zytiga. I just deal with the fatigue and take naps as needed..Greatjohn: Yes you still look great and will continue to do so. Just stay positive my friend
I started Xtandi on 3 July and fortunately no side effects.
But then again PSA has risen from 4.6 to 10.9 in 10 weeks so it's doing absolutely nothing to stop disease progression. MO told me today that Xtandi is not working at all.
So if its working for you take that as a positive and keep at it. The alternatives are not worth thinking about.
Good luck getting PSA down. I STARTED Xtandi about the same time as Provenge...so that might have helped also....although usually PSA is not affected by Provenge right away...and sometimes makes it go up.
John
I had to take naps everyday and sometimes went to bed at 7pm and never felt refreshed.I'm glad it is working for you. It helped me for 10 months and now I am being changed to another drug.Good luck on your journey
I've been taking Xtandi for over 3 years now along with Lupron, Avodart and estradiol patches. PSA remains undetectable but SEs got to be so bad that my Xtandi dose was reduced to 2 per day, so far so good but SEs are still significant, fatigue, dull headache, brain fog, memory issues, joint aches etc.. I continue to excercise daily, and eat a Mediterranean diet. Some days are better than others, but often I just have to grind through the fatigue taking breaks when needed and a nap daily in late afternoon. I have to adjust my activities knowing I'll likely be pretty wiped out by mid afternoon. I still enjoy the day, and accepted that this is the new normal and deal with it, it's better than the alternative. I'm grateful to be able to spend time with my family, see my kids turn into young adults and go fishing.
I have trigger finger on three fingers of each hand plus Duputrens contracture on both palms. Went to a hand specialist about ten years ago and he gave me an injection in both hands. I don't remember what it was. Trigger finger symptoms returned two years later. Went back and got shots in both palms again. Since then (8 years) I have had no problems.
Maybe ask about Zytiga, Prednisone. I'm on it 7 months now and no side effects to speak of other than ED Which is managed. I have no fatigue at all and lead a fairly normal life. I might mention I'm also on Eligard six month injection and Xgeva for bone Mets.
Hey John, I'm happy you brought this to the forum, and I see you got some very widespread comments back...I actually picked up something from this thread about taking the med before bedtime...I'm going to try and ease into that over the next few days... Maybe it will help...anything's worth a shot. Continued success on our Journeys Peace...Larry
yes..I read that on here...and that definitely helps with sleep. Just waking up NOT feeling like I haven't slept and going back to sleep(I just woke up 10 minutes ago....slept from 1 pm until 3 pm).
A good tall cafe mocha made with dark chocolate in the morning helps me. If the fatigue gets really bad and affects a vacation, I have some Nuvigil I can take in the morning to perk me up immediately and help me enjoy my vacation again. Nuvigil is strong stuff and I usually cut the pill in half.
It is fairly common for medoncs to prescribe Ritalin or Adderall for cancer related fatigue and to help with brain fog and cognitive issues from treatment. Cure magazine even mentions it in this months article about brain fog aka "chemo brain".
Xtandi for 13 mo. now. Never had any real exhaustion - needing naps, etc. (Except for a few weeks back was extremely tired in afternoon for a few days, don't know what that was all about.) But taking prednisone 5mg 2 times daily (1 x when wake up 1 time about 6pm) Take xtandi about 8pm and get drowsy about 1 and a half hours later, almost nod off if watching boring tv. But drowsiness goes away. Left hand will sometimes almost become a painful claw (cell phone?) and at night sometimes wake up with very painful right calf "charlie horse" I have to walk out. Thinking these began with I started gabapentin for foot neuropathy. Hasn't done anything for that BUT hot flashes went away. But I do drink a lot of pepsi with a splash of whisky during the day. Expect to die of kidney boulders long before the Pca gets me.
Fighting/living with this crap since 2015. I'm now experiencing the fatigue and/or exhaustion more and more. I know what you mean about taking a nap, waking up and feeling like I need to take another nap. Getting really tired of it.
I recently read that the Durban Poison cannabis strain is supposed to be the expresso of cannabis with no stoning or numbing...that it wakes you up and cuts through the bleary fog...so I'm planning to check it out to see if it helps. If you are interested I will let you know if it helps or not.
would be glad to know if ANYTHING helps...and I do hope it helps you...(and maybe more of us on here). Sounds like we are NOT alone as the "walking dead".... my day got
After using it for a few days, it does seem to help with the fatigue. It also seems to help with the nausea and headaches which I get from my Radium 223 treatments.
better once I got up at 3 pm! did some cooking, cleaning, shipping (for our little part time online business...) walked the dog ...made dinner...and made Coleslaw for tomorrow...so really in a different place than MOST of the day. I'll be really tired by 10 pm. But a few good hours is REALLY appreciated like today!
Thanks Yost...what did it do for your PSA numbers? if I may ask? It must be working well. I've gone down from 3.390 to 0.96 over about 3 months on it. I didn't get any good vibes that I was doing "great" from the Oncologist today...but he never tries to make me feel good. It's the first time I have been below 1....EVER. I figured if I did well enough I could cut back to 3 a day...which I keep hearing from other might help. He's ordered another Axumin Pet scan for me and one more PSA before we decide what to do. I was hoping he'd say the PSA results were looking great. I guess they are just "not too bad?"
PSA has dropped from 770 to 140. The next test is late next month. We discussed doing it sooner after cutting the dose and decided it wouldn't be especially meaningful, so we just stayed on schedule.
sounds like great momentum in the right direction...hopefully the dosage being smaller will not effect psa in a bad way...but rather in a good way AND you'll have more energy! This past couple of days ...I've suddenly been having a LOT more energy than I was for a few days...and, like I say, "it feels good to feel good".
Psa 59.9 3/2017. Last chemo 8/2017, started xtandi 8/2017 psa 1.7. Psa 9/2018 .2
(1.7 to .6 1st 3 mo.) and that would include the kicker from last chemo. Also lupron 8/2017, 2/2018, and 8/2018. So, seems you are moving down much faster than I did. No new mets and old mets now subtle, but uptake in both hips. Guy doing the report must have been in a hurry to get to lunch. Wrote about 3 sentences. Never even mentioned T-12 spinal compression. WTF.
Hello GJ: Ever try Tamsulosin (Flomax) to stop or reduce the nighttime Peeing? Could be that the interrupted nighttime sleep is causing your daytime fatigue.
Good Luck and Good Health.
j-o-h-n Friday 09/14/2018 10:40 PM EDT
Ritalin helps me greatly. Take one at 9 or 10 am and usually make it through the day wide awake. If I start feeling tired I take another around 2:30 pm. Sleep like a baby at night. I have more problems with 3 cups of coffee. Highly recommended. Ask your Dr..
Zytiga 1000mg with .05 mg predizone once a day. Lupron every three months. I’ve just had two. In Huston for my second mri since diagnosed. Hoping to shrink the tumor enough to radiate. It’s out of the box into the rectum so not sure where I go from here. Find out tomorrow.
Neither Flomax or Myrbetriq helped my husband. He was diagnosed with having a small bladder and I wonder if it can be stretched.
However, he was cut to two Xtandi after falling a couple of weeks ago. He had a recent PSA that was holding but the only way to know if the reduced dose is working is time and a scan to see if there is progression which is on track for January.
good luck...hopefully he will stay in a holding pattern...on just the two Xtandi and his side effects will be lessened.
My doctor (who does not specialize in making people "feel good") made me feel like something was going wrong yesterday..even without any numbers doing anything but improving from what I can see. I've actually never had a thumbs up from him....or a word of encouragement. so this isn't a new behavior. Hopefully, your husband (and you) see a more "personable" Oncologist.
p.s. it's not so much a bladder thing...the tiredness. I feel into a coma at 10:30 p.m. and only got up 3 times ...with no great urgency to pee...but just "felt like it"...and went back to sleep each time...until 8:30 a.m.this morning. The problem...I'm feeling rested right this moment....but in an hour or so...I'll be ready for a nap...and after that...a nap...and after that...a nap...LOL. My partner and my Sparky (our wonder dog) comes and joins me...in the afternoon...and that seals the deal...I'm out for an hour and half or more. Just don't want to sleep what life I have away...waking up ready to sleep.
I have been on Xtandi since 1 July (2 1/2 Months.) Had problems with nausea initially, but went away after I began taking it one hour before evening meal. I sleep well and have vivid dreams. Only problem is swelling in the feet and sometimes ankles. Swelling goes down in the evening and not so bad in the morning. Overall, I have increased energy and have lost twenty pounds in this period since switching from Bicalutamide. I don't know if there is a relationship here or if due to other factors. Also stomach irritation is less. I take calcium boluses one hour after morning and evening meals generally with a cookie. Have not had any lab as I understand it takes 13 weeks before a meaningful PSA. I have bone mets and the pain in the ribs from activity seems to be lessened by at least 60%. I hope that this means Xtandi is working. I was offered Xofigo, but there were questions about how effective it would be since my tumors exceeded 5cm. I am 79 and still work every day on my ranch (spent five hours cutting hay yesterday.) Good luck and keep plugging.
Thanks for your input...no swelling here and almost no nausea yet...even through Chemo, etc. But this fatigue and pain in my legs and feet are horrible. I bumped my 4 Xtandi pills back from 10 pm to 9 pm last night...and, alas, was in a coma (asleep) by 10:30. Slept until 8:30 with only 3 pleasant wake ups and trips to bathroom...I may try moving it back to 8 pm...just afraid I'll be going to sleep BEFORE my little doggie...and he's usually sleeping by 8 pm...LOL.
P.S. I'm also not working "the ranch"...I'm impressed!....but I'm doing homework, housework (cooking for me and my partner and someone we take care of who's on mental disability)...so staying pretty busy...AND going to gym about 3 times a week. Walking total (appx) 3 to 5 miles a day.
I do not find Xtandi to be sleep inducing. In fact, I am a little restless when I go to bed at 10:30 or 11pm. I read for 15 minutes and then I am ready to enter deep sleep. I am resting well despite 2 or 3 bathroom trips. Going fall back into deep sleep quickly. Vivid dreams are sometimes entertaining and sometimes produce questions. Fortunately, no night mares thus far. Wish you well on your journey.
my onc. didn't like me cutting dose either. Cut dose and within three days marked improvement in quality of life. After 45 days a an invalid on Xtandi 160, cut to 120. Within less than a month, functioning and back to work. never going back to 160mg. got to have life worth living.....
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