Well I stopped taken Xtandi for 10 days and started on on pill a day for three days then stopped again .. I have been off for several days and still have back pain and anxiety,sleep issues. The oncologist says to start taking again and the side effects are caused from something else..
Maybe but I am not sure that’s the case. Not happy camper!
Ron
I'm sorry you're having bad side effects. My husband had severe sleep issues on the Xtandi. He was literally walking around like a zombie when, he could get out of bed. He barely lasted 2 months. I hope it works out for you.
If you still have those problems when not taking Xtandi, how can Xtandi be causing them?
Cause Xtandi has a long 1/2 life probably longer for me due to having one stage 3 kidney..
Hey Ron .... I’ve been taking Lupron Xtandi for 25 months and it has about crippled me. Physical discomfort / pain from mid back down, bp issues, bg issues, cardiac issues etc. having said that, I sleep like a baby as shown by the ahi meter on my cpap machine. I’m so spent and exhausted that I nap a lot during the day and sleep at night too. Anxiety Wise, I attribute that to the fact I’m a croaker ... I have xanax for that which works well.
The back pain could easily be the Xtandi but the other two might be something else. Xtandi has pretty much crippled me and I even use a e-trike to get around .. I can’t walk very far. My bp, bg and heart are screwed up big time from adt , Still, I pull up my big boy pants and carry on , knowing that Lupron Xtandi has miraculously saved me from home / inpatient hospice ( my original DX ) It’s like miracle drugs that have already given me two more unexpected years of life and counting. I do really appreciate that even if it’s a little rough around the edges.
Just say’in 💪💪💪👍👍👍❤️❤️❤️
We appreciate it too............
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 12/16/2020 2:48 PM EST
Thank you my homie .... I appreciate you mucho too , your humor does so much to uplift the group and make people’s spirits feel so much better. You turn those frowns upside down buddy.
🌸🦋🌻🌼🌈😀🦋😀🙃🙃🙃
Speaking about upside down....
Why do birds fly upside down over Fresno?
Because it ain't worth a crap....
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 12/16/2020 4:53 PM EST
They mostly fly upside down because they don’t want to get their feet sticky and dirty if they land..
They also fly upside down because of all the alcohol fumes from all the wineries. Very pungent here ....
They're bypassing us tonight...because of the snow storm...... (I hate snow).....
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 12/16/2020 7:38 PM EST
You need to get out of there to your yearly 3 month winter rental in Sarasota. Or come out this way, around 70 - 75f , every day, year round in San Diego. 60f , more or less , here ..... this time of the year but the sun still has a lot of punch in it. I’ve got a stand of banana trees next to wifey’s jacuzzi tent pavilion for privacy. Many in bloom attracting dozens of hummingbirds. 14,600’ mountains within eyeshot, plenty of snow up there. I used to live and work in Florida, the population would swell every winter with people from NYC, and N.J. . As long as you are satisfied with an average nice rental , not in premium locations, Florida is very affordable.
This is a winter flyway and winter destination for hundreds of species of birds and waterfowl. Bird populations enormous here in winter.
Your painting a pretty picture, your place sounds really nice. Are they still dealing with the fires or are those taken care of now?
I think they are mopping up some outlying left overs but they are out now. We had our first rain of the season which helped a lot. It gets very hot here in the summer , sometimes for months on end. This is the milder time of the year when all the winter veggies are grown. All the Canadian geese and wild ducks etc. stumbling around the local parks this time of the year can be pretty messy too. Yayahahahaya yuck ...
Migrating birds are basically unafraid of much of anything or people in their winter setting. They walk right up to you expecting you to feed them, geese can be very aggressive if they don’t get their way. Nothing is much scarier than a big fat Canadian goose with a dripping runny nose that wants to get into your lap ( bird flu ewwwwwwww ) . Fortunately the vast majority of our winter visitors stay in the large wetlands on the west side of the valley. The state grows massive acres of corn and wheat and other grain to feed them all winter long. I have videos on my YouTube page where 10s of thousands of Canadian geese take flight and circle to land nearby to new food plots. The bird sounds in the estuaries can be literally deafening at times. They are kewl tho. Birds are surprisingly social ... large flocks of big white pelicans and seagulls from the coast come over to socialize too. Lots of those huge birds that look like small 4’ ostriches , sandhill cranes.
I’m hopeful of getting out to see them again .... if not this year, then next , if I’m still here, as the vaccine should have fixed things by then. Hope I’ll be able to travel better then. I have so many intestinal issues caused by medications , now, that traveling is an adventure. In my truck I have a camping potty setup with a privacy curtain that uses magnets and a sheet that attach to the suicide doors on my crew cab. Stopping in the country is fairly easy, but here in town it can be problematic . Stopping for an intestinal emergency near a open air market parking lot or restaurant gets dicey ewwwwwwwwww ... I carry large contractors plastic bags to sit on and a couple changes of clothes just in case. Lots of TP and clean wipes .... no biggie, I got it covered yayahahahaya.
We have traffic............
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 12/16/2020 9:55 PM EST
37 million people here in an all car society ... we’ve got a little traffic too ....
But the drivers here only use 9 fingers on the steering wheel.....
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 12/16/2020 10:12 PM EST
Yayahahahaya nyc’ers are famous for that ... is that the Bronx salute ?
Out here most people don’t make eye contact and especially not the salute. Way too many shootings and nasty gang bangers out there .... not to mention those grouchy motor cycle enthusiast. 😂😂😂😂🤣😊
The motorcycle guys are mostly a friendly lot. Especially if you give them some space as they are so much more vulnerable from cars and trucks.
Yayahahahaya. Well I kinda intentionally used the descriptor “ enthusiast “ when , of course “ associates “ was the proper term. I’m sure it’s different everywhere but here we have jargon that describes enthusiast and associates . Both form clubs. One you can join , one you are inducted into. Associates in clubs never speak of devils or angels or bandits or sinners in public. Members of one are friendly and members of the other are “ grouchy “. Grouchy means that there are “ them “ and there are us , the associates . Associates with boots on the ground don’t want or need any more “ friends “ also known as them. You always assume non club members that approach you are “ them “ ( law enforcement) even if they aren’t. Thus the grouchy part. For me that was long ago when clubs were just developing from clusters of friends / associates and fighting in bars / traffic infractions was the most trouble we ever got into. things have changed dramatically these succeeding decades , unfortunately.
We have pigeons........
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 12/16/2020 9:54 PM EST
not that many pigeons here , instead we have doves. About exactly the same thing ... same size, same shape .... doves can eat surprisingly large amounts of food, .... I buy 10 pounds of peanut pieces bird food every three weeks or so , to feed the neighborhood flock. When you have 30 - 40 of them chowing down at the same time, doves are surprisingly noisy eaters too yayahahahaya. In the winter doves fright / flight hormones kick in and they aren’t very friendly..... in the spring thru fall, all these doves were born here locally ... they are extremely friendly.
Here they chill with a partner and they Coo......(we eat them as well as eat pigeons)...
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 12/16/2020 10:18 PM EST
Out here they form flocks in the fall - winter and hunters shoot them. Probably almost a mouthful of food on one of those. Stupid to kill them. The rest of the year,, like you said, they form pairs and coo yayahahahaya. They come and sit with me when I’m sitting out back not feeling well. Doves communicate with eye signals and grooming signals. They sit with me , give me “ winky eye “ and nod off .....seemingly knowing I’m not feeling well. Generations of them have been born in my back yard trees.
May I offer my Dad's treatment plan? Dad is taking one Xtandi Pm nightly. Lupron injection every 3 months. This has been in place for 18 months. His PSA is 0.07 recently. Dad is 88, been in treatment for 15 years. Other treatment plans over the years, bone Met to 9th rib posterior, radiated 8 years back. His Gland surgery was at Walter Reed in 1994. He was exposed to Agent Orange on R&R in Nam. Was an attack pilot, flew A4 skyhawks, 3 tours, ages 34-36, retired 4 star Admiral, retired Navy after 39 years.
I suggested his treatment dosage with his Oncologist because not many Octogenarians were/are in this test group prior to the FDA approving Xtandi. After reading many of your stories here about side effects, I felt empowered to suggest one at night to begin. This is the dosage now.
So the doctors don't know everything. Stand up and go for the lowest dosage, test the PSA level, then decide together the treatment. Quality of life is most important. Bless you.
Give him my best regards..... For laughs tell him that in the service I was a U.S.O. commando (you might not get it but I'm sure he will)...... Tell him to kick those little Pca bastards in the ass......
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 12/16/2020 2:55 PM EST
Thank you fir saying this. My father is 86 and could not bear 160mg of XTandi- tried 120,, not that either. Stopped and restarted at 40mg. will try at 80mg soon. Also, Lupron every 3 mos. Similar story with PSA and bone met. PSA to be tested again soon. Either way, , his quality of life is much better right now.
He has mild dementia and it was awful for him at night with 120 and 160 mg of XTandi. . With the insomnia and dementia, he wasn’t sure whether he was coming or going. Walking around the house from 1-5am, feeling lost and alone. On 40mg that has stopped. Hopefully, 80 mg will be better too.
Been on Xtandi now for 4 years , also get a Xgeva and Eligard shots monthly. I have pretty much decided it’s the hormone shot the gives me the awful dreams that or the pain meds. Ms Cottin
Go to YouTube and search K4NLZ and page down thru my eclectic videos to “ thousands of geese in flight , Merced sra “ . There is a waterfowl sounds video there too. Is it the waterfowl management area SRA #3 ( there are 5 of them ) , off 165 going north out of central Los Banos. There is a automobile tour road in the preserve, free to get into. All 5 SRAs are worth visiting. Also have kayaking in the mountains, drone flying and coastal visit videos, along with infrasound and home brew high power lasers and cannabis closet growing.
Also google Monterey Tides Hotel for photos .
I meant to edit my post and deleted it. Checked out the you tube videos. I see you like lasers. I used to repair surveying instruments that used lasers to measure distance. Laser levels just started getting popular at that time so I was calibrating those as well. The green one cutting the electrical tape was interesting but I don't see it replacing scissors 🙂 The geese footage was a little blurry but even with that there were a lot!
I’m a retired biomedical engineer. Those laser videos are “ back in the day “ lasers when anything over 30mw was hard to come by. I have a new technology LEP ( laser excited phosphor ) white flashlight that shines much farther than the human eye can see yayahahahaya. I’ve repaired 7 watt green tube type surgical lasers that needed 440v three phase power to run. I used to own a yag eye surgical eye laser the size of a chest freezer. A doctor gave it to me. It was a pulse laser that could burn holes thru a aluminum garage door across the street. I have lots of stories about trouble I got into with that one. Nowadays there are mandatory federal prison sentences for getting into laser trouble. Yea those SRA videos were taken with one of those HD pocket video recorders , popular long before good cameras in smartphones. The quality in the video got lost on YouTube converting it into a YT format but you get the idea. There were two more flocks of geese equally large at the SRA that day ... that was just one of three.
You can read about the studied Pharmacokinetics of Xtandi in section 12.3 here:
I get the same thing from my on cologist regardless of the side effects that I report to him from Xtandy. I just stop taking it for months at a time until my PSA gets too high.
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