Xtandi and ache in tailbone

[Scootman]

Has anyone experienced aching in the tailbone and surrounding muscles? Started Xtandi and about a week in to it I started have aching in my tailbone did not have it before and only bothers me when I sit. Feels as though I had been sitting on concrete and soreness afterwards. Would appreciate anyone,s input. Thanks Scootman

[Roberthale7318]

You may have to consider radiation… That did it for me😄

[Hidden]

I haven’t had that pain but many different others . Some soft pillows or maybe sitting as least as possible . Others should give you some thoughts . Take care Scootman

[Scootman in reply to Hidden]

Thank you

[Hidden in reply to Scootman]

Hang in there guy. You will find a fix to that pain. Keep rowing 🚣‍♀️

[Scootman]

Yes bone ,ct and mri. Just started after the start of xtandi.

[Fanger1]

Hi Scootman,

I've been having off and on tail bone pain for a few months now and my scans from November were normal. I plan on getting new scans again soon after my MO gets a pre-authorization from insurance. I hope it's not PC and so for me now, I seem to get some relief by doing a few different types of stretching exercises designed for the tail bone area on my yoga mat. I encourage you to look up these online and try it to see if it helps. Good luck with your case.

[Hidden in reply to Fanger1]

Great advice. Sitting must be uncomfortable ?

[Fanger1 in reply to Hidden]

Yeah, it comes and goes so maybe it's from too much sitting. Chiropractic care and stretching is helpful for me. Hope Scootman can try stretching to see if it helps him too.

[Hidden in reply to Fanger1]

For sure dude. Sitting kills the hips and all . Stretching is great as is yoga. I admit I do neither. After the fog clears I’m going to start attending yoga classes with the wife. I never have stretched after karate at 20 years old .

[Hidden in reply to Fanger1]

For me it was two much time behind the wheel driving .

[monte1111 in reply to Fanger1]

You got it. I am not only a couch potato, I'm also a chair potato. And when I go to bed, I'm just a pile of French Fries. I add cheese in the middle of the night. Some, like Whimpy-p and j-o-h-n are hash browns. Turn 'em with a spatula, add two sunny side up eggs and they will stare at you until dawn. Sleep well.

[Scootman]

Thank you

[Scoofer33]

As a 54-year-old I was diagnosed G9 (5+4) in 2015 with substantial mets to my hips, pelvis and spine, so extensive or systemic, in fact, that I was told the curative use of radiation option was “off the table” for me. In 2017 I complained to my Medical Oncologist after enduring a year where it felt like I had a “charley horse” in my right butt cheek. He referred me to a Radiation Oncologist who, after imaging the area with a CT and bone scan, suggested we give a single palliative dose of radiation to the sacrum. I explained that my sacrum was not where I felt the pain. The RO said that in his experience the pain often radiated to another location based on what was happening at the sacrum. I said, “You’re the Doc! Let’s try it your way.” I’m glad I did, because two weeks after that “zap”, the pain disappeared! Well, for quite a while now I’ve been plagued by pain in what I’ve learned is, oddly enough, called the “sit bone”. This is the part of you that bears your weight when you ride a ten speed bicycle. I’ve also been experiencing the same type pain as before, only this time it’s emanating out to my left butt cheek. It’s possible I have cancer giving me trouble in the sacroiliac joint of my pelvis. I’m going to speak to my RO about the possibility of giving one more palliative dose to my sacrum to see if it will take care of it again!

[Hidden in reply to Scoofer33]

I was also dx’ed in 2015 at 53 yrs old. Very good that the”Zap “ helped that pain . I was #4 as you were. I had a 4+4 gleason .. not the systematic mets you had. I did 8 weeks imrt but I’m told that all treatments are palliative for us stage #4 guys . .. curative doesn’t exist without a miracle . I believe ..I think it’s a miracle what the drs can do for use. But still the pc is long winded and always there for us if we should ever decide to submit . Five years of constant adt and that imrt took their tole on my SI joints, hips and all of my joints. I’m lucky to be alive after the start I had with APC . Take care ........Scott

[Scoofer33 in reply to Hidden]

Hey Whimpy- p! We certainly have a great deal in common. Our Southern California and Arizona connections, for example. I like your avatar picture of Jim Carrey next to your name! in fact, "I like it alot!" ( an odd line delivery my wife and I often replicate!!!)

[Hidden in reply to Scoofer33]

“ I like it Aalot” 😂Comedy and music are it for me. I’ve watched some old Don Rickle and other comics on the old tonight show clips. Everything’s at or fingertips with the internet . We happily landed in Prescott last July . I grew up in the Bay Area . Wonderful if your loaded . Just too many humanos in the big cities for me. I’ve always preferred to visit and party in the city then live on the outskirts . Especially after this worldwide fiasco. More folks will vacate the urban scene . Cuidate mucho Amigo😎

[Scootman]

I do have moderate stenosis L3-4 and L5-s1 disc post radiation change with mild left sided foraminal encroachment,degenerative disc disease with mild stenosis L2 and moderate L3-4

[Scootman]

I also have nerve pain in my right leg where my hamstring has detached from the sit bone. It causes me to have aching and I get a restless leg syndrome sometime alternating in both legs primarily in the right though.

[j-o-h-n]

Can you please update us with your bio? age? location? scores psa/gleason? treatment center(s), treatments to date? doctor(s) names. All info is voluntary but it helps us help you and helps us too. Thank you..... (my ex-wife is my pain in the butt)....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 05/01/2020 5:25 PM DST

[Hidden in reply to j-o-h-n]

Did you not reciprocate the pain?

[j-o-h-n in reply to Hidden]

Moi?

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 05/02/2020 4:55 PM DST

[Hidden in reply to j-o-h-n]

Claro que si’! When you said she “IS a pain “ you probably mean “was”

[j-o-h-n in reply to Hidden]

IS is correct.... she IS still not room temperature.........

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 05/02/2020 7:21 PM DST

[Hidden in reply to j-o-h-n]

I’m blond haired blue eyed 36-24-36 but I’m spoken for j-o-h-n.😎✌️❤️

[j-o-h-n in reply to Hidden]

SHOOT.... I'm just in time to be too late...........

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 05/02/2020 5:26 PM DST

[Hidden in reply to j-o-h-n]

Better late than never ..

[Scootman]

thank you

[Scootman]

What is so frustrating is if you go to the Xtandi website it clearly states the most common side effects

What are the most common side effects of XTANDI?

Weakness or feeling more tired than usual

Back pain

Hot flashes

Constipation

Joint pain

Decreased appetite

Diarrhea

High blood pressure

But my Doctors insist that these are not side effects they insist that it is something else going on. I can tick off at least 6 of the side effects . But I am told that can not be right and what that does is just make you think your cancer is getting worse. It is so frustrating because every drug has some side effect. I know they are way more knowledgeable than me but I really feel that they do not always understand all side effects. Scootman