So I have a question about a pain in ... - Advanced Prostate...

Advanced Prostate Cancer

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So I have a question about a pain in my ass.

FinalBossMatt profile image
FinalBossMatt

Sorry, I had to make the joke after seeing the passing of one of our own at such a young age in a previous thread.

Anyway, I've had this hip pain that's been bothering me for almost a month now. It goes up on the right side, down to my butt (shut up j-o-h-n) glute and hamstring. Some days it's way worse than others. I spoke with a pharmacist where I get Xtandi from and she said sometimes it causes muscle pain and lower back problems too.

If any of you have ever had this, does it come and go? Sometimes it's just fine but I just have a muscle that feels like it's been through the wringer and even with over-the-counter pain medication that's been taking care of it, for now, just wondering how to get it back to normal.

Or am I asking, "How much does a bag of groceries weigh?" since this isn't a one size fits all disease? :)

68 Replies

We are all different... Xtandi gave me every symptom they listed except death.... I was a complete invalid with pains and inability to walk or balance. Cut dose by half and got my life back... If all you have is a roving pain you are doing great. Hope your aPca is being controlled. Good luck.

You got that right about us all being different. It is difficult to walk sometimes since it will go to the hip as well. My bedroom is upstairs too so there's that as well haha.

I'm also taking a 3 month Lupron shot so I'm not sure things are going up again. No point in speculation. I'm just doing my best to rest for now.

As great as these medications are, with the side effects I think of the old Saturday Night Live Commercial, "Happy Fun Ball" and think medications are like this haha.

youtu.be/GmqeZl8OI2M

Got that right. Venlafaxine was proscribed for me for hot flashes when I had to stop Megace acct it ruined my driving.. 3 Mo on venlafaxine and my balance was going away again, hot flashes more than doubled and my vision went from 20/30 to 20/300. Now I just put up with hot flashes and life is better. Love the ceiling fan over my bed. Vision recovered to 20/40 which I can live with.

Muffin2019 profile image
Muffin2019 in reply to Shooter1

I tried something for hot flashes awhile ago, gave me nausea, loss of appetite and affected my vision and tiredness, I stopped after a week and the side effects went away, the hot flashes at about 14 or more a day tells me I am alive, the ceiling fan and a/c is our friend, on arbitrone full, amount.

Jack02 profile image
Jack02 in reply to Shooter1

Shooter1 my dad is a replicant of what you have just explained so much so that I have shown my dad,my dad has been taking atxandi for nearly 12 months and has become an invalid he can not walk, he can get his balance, he has no quality of life at al, the difference is shocking and distressing and iv always thought it’s the treatment,and now I have red this it’s proved to me it’s got a good chance, may I ask how you halved your medication? And do you have mets in your skeleton? My dad needs his life back to enjoy it and then I think he can learn to live along side the diagnosis, I would be so grateful if you get get back to me and I hope your remaining well xx

Shooter1 profile image
Shooter1 in reply to Jack02

I was a complete invalid. I couldn't feel or wiggle a toe thus my balance was nonexistent. My wife had to wash me as I stood in the shower and held the curtain rod. We decided that I had no QoL and 3 years of life would be better than 10 years with no life. Cut the dose to 3 pills every night and saw immediate improvement, then 3 on day and 2 the next--better yet. Settled on 2 pills a day and recovered with only some residual neuropathy. I was able to go back to work as a railroad engineer for a few months and then retired.

That was 3 years ago. My PSA was stable until about 3 months ago and is now slowly on the rise.. Xtandi isn't holding everything back now, but I've had the 3 yrs of good life. I'm still fine otherwise. No symptoms at all, work in garden, ride my bike, cook and enjoy kids and grandkids.... Life has been and is good since I cut my dosage..

Best of luck with your dad.

P.S. My my oncologist told me he didn't know that xtandi could do that and wanted me to go back to 3 and then 4 if I could.. I told him no way. He couldn't hand me pills and watch me take them so it's been 2 pill for the last 3 good years.

Jack02 profile image
Jack02 in reply to Shooter1

Thank you so much for getting back to me, my dad feels like he his dying he was a fit man playing sports on diagnosis his psa was high it was 525 treatment has been great and brought it down to 0.34 but he can not walk barely and I have though from day one it was his treatment we have an app 22nd and I am going to seriously talk about it they did say if he couldn’t tolerate it they would try him on zigra so I’m going to ask to reduce the meds and see if he feels an improvement, or see if they can put him on zigra it’s no way for him to live his life it so awful bug in the same token his specialist is happy with his response to it with his psa level have they not offered you zigra as a second option? He can balance and he is wobbling around and his in pain, weakness of his hole body he keeps saying I’m not going to be able to walk today, it’s good to come across someone that as had the same disabling effect to know my mind was on the right wave length so to speak iv heard men can live a good life along side advanced prostrate cancer and could not understand why my dad is getting worse on a daily basis, thank you so much for getting back to me xxx

Shooter1 profile image
Shooter1 in reply to Jack02

All the side effect of xtandi on full dose were cumulative for me. Blood test today showed PSA still climbing--30% this month, so now I can match his..0.35. Highest since start of treatments in Aug 2017, wish me luck as I wish you luck. It's been a good run and I'm not giving up...Alk/phos also up so looks like it's in my bones again..

Jack02 profile image
Jack02 in reply to Shooter1

So it’s still low my dad has mets in most his skeleton I wish you all the luck in the world remain positive I want my dad here for many to come but with a good life, all the best to you xx

MateoBeach profile image
MateoBeach in reply to Jack02

That is no kind of life and no dignity. I support you in demanding a change. Reduced dosage or a switch. The drug approval process for cancer drugs is biased towards approval of maximal tolerated doses instead of minimal effective doses. This is in order to increase the chance fr approval. Once it is released that is the dosage that is specified. Only later, and slowly, may it be learned that lower dose may have better trade off of reasonable effectiveness with lower adverse effects.

Jack02 profile image
Jack02 in reply to MateoBeach

Thank you so much for your reply, I have called his drug specialist today and explained everything she then went and spoke to dads ug and he as dropped his meds from 160 mg to 80mg half the dosage, and is sending him for a mri to make sure everything is all well, do you think we will see an improvement? Do they give the max dosage of xtandi to every man to start with them? You are all so knowledgable on this site and as really been a god send that I came here it really as, but in the same token I don’t want his psa rising, we have app next wk so I can ask a lot more questions then, thank you again and your right my dad or any man can not live like that my dad as no life at all so distressing on him and my mom and myself I do hope that we will see an improvement I have heard many men with higher psa levels then my dad that live a comfortable life and that is what we want thank you again and I do hope you are well x

MateoBeach profile image
MateoBeach in reply to Jack02

Good plan. 👍

Jack02 profile image
Jack02 in reply to MateoBeach

Thank you let’s hope remains to go well xx

Shooter1 profile image
Shooter1 in reply to Jack02

Best of luck. I have seen several lives ruined by side effects that just weren't tolerable and Drs who were stuck on max dose regardless of QoL.

Jack02 profile image
Jack02 in reply to Shooter1

Thank you, yes your right but they didn’t even question it I’m hoping they will keep a good eye him and may be give blood test reading of psa a little more often thank you again for both your comments it’s really means a lot to have your advise stay well xx

Shooter1 profile image
Shooter1 in reply to Jack02

My MO started monitoring my PSA every month at the three year mark into my course on xtandi. Seems that is where it often starts to fail..I got an extra 6 mo. before PSA started back up.. He must know a bit more about my treatment than I do, which can be a good thing Best of luck on reduced dose. :You should see improvement soon.

Jack02 profile image
Jack02 in reply to Shooter1

I just want to say thank you, if I had not come across your message I would of never of knew my dad becoming a invalid was really down to his treatment, I knew it had severe side affects but not to this degree, my dad as called me this morning crying saying for the time in months he was able to get out of bed comfortably and it’s only been 4 days on half the dosage, so thank you!!! May I ask is there important questions I should be asking next wk to his mo? Any information would be most greatly appreciated, hope your well have a great Sunday x

Shooter1 profile image
Shooter1 in reply to Jack02

Wonderful news!! I learned it when I had my xtandi refill from another pharmacy and got the full info packet instead of the patient pages. Then called a pharmacist friend of mine to see what he thought.. He told me to stop immediately acct. my symptoms and if I wanted after 2 week start lower dose... I just cut dose to achieve great improvement. I've had over 3 years from it now, but it looks like it is loosing it's effectiveness on me. Time will tell. Good luck and remember Life Is Good.

Jack02 profile image
Jack02 in reply to Shooter1

Well you have done amazing this afternoon i couldn’t believe the difference it was like looking at a new man my dad my forever dad was coming back, it gets me wondering why specialist do not drop the dose when psa as come down enough to lower the dosage, but not every one will react the same way, there is only one way down this path and that’s with positivity and happiness all the best to you xx

monte1111 profile image
monte1111 in reply to Shooter1

LOL. I don't think death is a symptom. And, yes, I knew pain in my ass and j-o-h-n would be in the same paragraph.

MateoBeach profile image
MateoBeach in reply to monte1111

Interesting observation that death cannot be a symptom because it is not experienced. Or maybe it can. In no hurry to find out but J-O-H-N is a side (splitting) effect 😆

Shooter1 profile image
Shooter1 in reply to monte1111

Not a symptom, just an unwanted side effect.

Hello FinalBossMatt,

I don't know if your pain is related to pressure on nerves by the bones but maybe it's worth asking if palliative radiation could be helpful in your case.

Best of luck.

Alan

This sounds to me like sciatica--which would start at the nerve bundle L-5 to S-1---and go down the SI joint, and the main pain would be in the Glute Maximus, where it meets the Piriformis muscle. I would see an Orthopedic Spine Doc. for an evaluation. Treatments could be an Epidural, to the spine area, or a Nerve Block--if my suggestion above is correct.

Nalakrats

ARIES29 profile image
ARIES29 in reply to Nalakrats

Sciatica could be. I had the same pains years ago due to a back crushed disc. One shot of Quortazone, (not sure of the spelling), & have not had the pain since. Just a bit of luck I think that it worked because I was in traction for a week before that.

Shooter1 profile image
Shooter1 in reply to Nalakrats

Epidural every 6-12 mo. keep me going... Crushed T-5-6-7 with to many bends and turns above and below to function. Shots in the back can be great. Collapsing wedge fractures in T-10-11 area don't help either.

Nalakrats profile image
Nalakrats in reply to Shooter1

You are starting to sound as old as me!

Nalakrats

Damn, Nalakrats for the win again. I think that's the issue. Me being out of shape and in a sit-down job doesn't exactly help.

The pain does vary though. There is a Chiropractic College South of Daytona Beach I have been to before. They don't do the weirdo hocus pocus shit many Chiropractors do, they just stick with the basics, and I've been helped there before with good results when my pelvis went out of alignment.

I've seen the numbing alternatives and I'd prefer not to do that shit if possible.

Still, I appreciate the observation.

Dett profile image
Dett in reply to FinalBossMatt

Sounds like Nalakrats nailed it. Sciatic pain is hard to deal with. You might try physical therapy for a longer term solution.

Hey Mat ! my wife suffers fromSciatic also. Sitting is bad and yoga helps her much . I have random pains throughout joints and

Muscles , ligament and tendons. It’s all from treatments. I’m in osteopenia taking prolia and bone nutrients in the attempt to slow it down. My hip pain has lessened and my bone density improved after 2 yrs on prolia and nutrients .. hang in there ! 😎

There seems to be many variations of sciatica. I have bulging discs at L5 and S1. Most of the time I am pain free, but the pain hits in the hip after I walk about 100 mtres, worse if there is a slight uphill slope. If I sit down for 10 minutes, the pain dissolves and I am ready for another 100 mtrs. I have no pain at any other time.

Fairly certain it is not related to PCa.

Have tried Physio and 2 lots of cortisone injections with no improvement.

Am resisting, but may give in to surgery.

monte1111 profile image
monte1111 in reply to Chask

Tramadol helped my L5 and another disk. To lazy to go look up which one. Injured at Super Bowl Party. The handicapped room I had reserved got flooded. Guess I saw this coming. I could bend again within a week. A cure? No. I can bend, but not for a long time.

No jokes j-o-h-n. I am already spindled and mutilated.

MateoBeach profile image
MateoBeach in reply to Chask

That’s where I was. Way too limiting to live life fully. Got the MRI which showed the disc to nerve root compression. The contrast shows the inflammation and lack of blood flow. An epidural injection there gave 100% relief proving that was the source. Microscopic decompression surgery (minimally invasive) is the fix. Worth going for it.

Hi there, my dad has this and my dad can barely walk he is on xtandi more in the right side and goes right in his glute he is having radiation tomorrow as they think it’s mets pressing on nerves in his spine, I’m hoping so much this will help him, do you have mets in your spine? X

Cheerr profile image
Cheerr in reply to Jack02

Hi Jack,

Did the radiation session help your dad with the pain he was facing?

Jack02 profile image
Jack02 in reply to Cheerr

Hi cheerr they didn’t give him any, we turned up for his app and saw him walking poorly and asked why, cut the long story short she was convinced it was the xandi that was helping par mobility poor, as par doesn’t get bad pain from his back she didn’t want to give him any, they have now cut his treatment but half the dosage, a little improvement but now I’m worried that his psa will start rising, what a roller coaster this journey is hay, hope your well and so kind of you to ask xx

Cheerr profile image
Cheerr in reply to Jack02

I'm glad to hear there's some improvement now. That's the complexity with these treatments, we try to treat one thing but then there's a worry about something else. I hope the half dosage will continue to keep his PSA down for long. :)

Jack02 profile image
Jack02 in reply to Cheerr

Hi cheerr oh I would love nothing more then the specialist to say it even stayed the same I’m just hopi g it doesn’t rise, yes it certainly does course so many side effects doesn’t it, every day is pain is somewhere else it just moves around a lot! Thank you so much you take care and stay happy xx

Sorry for this reply that really isn't helpful, BUTT, I was expecting a reply from a certain somebody about a "former wife" being the only "HUGE PITA" he's ever had. 😀

Sounds familiar. Most likely a tumor pressing on a nerve in the sacrum area of your body.

I had similar pain and puzzled a few doctors. Various treatments did nothing. Then an orthopedic surgeon looked at the MRI for ten seconds and said my problem was an arthritic growth on one vertabra pressing on the nerve, a lumbar radiculopathy. Sliced open my back, did a hemi-laminotomy, and for several years now it has been totally pain-free.

Interesting points about why my sciatica is being a pain in the ass and other points on my body. I'm sure I can completely remove the fact that I am over 300 pounds as a reason why I have it. ;P

I'm getting one of these and doing some lower back strengthening exercises for a few days. I've always wanted one and now it looks like I need it. Maybe write it off on my taxes haha. :)

If not sciatica and pain is just above hip by your back could be emanating from kidney, perhaps a stone

The clinical trial shoots the magic potion in me every Thursday. Back pain starts by the late afternoon, gets worse for 36-48 hours and then, mostly, goes away. It is never in the same spot for very long. Stretching helps, and now I have started to strengthen my core which provides relief.

I am pretty sure that my back cramps were worse during the weeks the vaccines were administered. I also got a Firmagon shot on the same day as one of the transfusion days.

Since every physical pain is a cause for concern, I tell myself that as long as the pain seems to move around to different muscle groups, it is unlikely that a metastatic lesion is causing the problem. My pain is not debilitating and doesn't stop me from doing anything.

I find that icing the pain spots provides relief for a decent amount of time.

I also apply THC topical creams, and that is also helpful for a medium amount of time. It is also nice to get my wife to rub it on my back. Human touch has become a rare ingredient. It was hard enough from hormonal treatments. The pandemic seems to have made it worse.

Philly

Yeah the Pandemic has made everything worse. The cure has been worse than the disease.

Good call on the ice packs too. I can look at stuff like the hot cream stuff for muscles.

Hey FinalBossMatt!

Have you gone to a competent chiropractor? You may have sciatica. I had a back injury in 2010. Lumbar vertebrae 4 and 5 were pushed in. Chiropractic adjustments, four times a week at first, then twice, once , every other week, once a month and now as needed has eliminated that. There are exercises that I did daily but now do not as often as I should. When my back still would get tweaked--tweaked is not by any means the sciatica I had--an adjustment or two would be all that was needed. At it's worst, the sciatica felt as if my right shin had just been broken, the fresh pain of a break. Not the pain after an hour or a day, but the fresh pain one feels immediately after a break, every second. Yoga exercises were very helpful.

About fluoroquinolones. In 1981 my right arm was in a sling. I had a shoulder injury. I rehabbed that injury with emulsified cod liver oil, Knox Gelatin and an adjustable chest expander.

In 1988 I was shoveling a heavy, wet, snow. I was throwing shovels of the snow across the street. There was a "snap" in my left lower back. It healed in about 6 months. My chiropractor told me it was a ligament for the SI joint that had ripped.

These injuries had long been forgotten until the fluoroquinolones, Cipro orally, 6 pills, 500 mg, 2 the day before, day of and day after procedures. Just prior to a procedure that long needle for an intramuscular, "humongous" a nurse told me, shot of Levaquin. Two of the fluoros mixed together. Also, an oral prescription for Levaquin, 5 or 7 days, 2 a day, 500 mg each.

Months after a series of these fluoros all I did was un rack my warm up weight for some incline benches. My right shoulder audibly shredded. It was as bad or worse than in 1981. The chiropractor I went to has decades of experience. She knew about the cancer. She asked about fluoroquinolones. She has seen these drugs "eat' old injuries like low hanging fruit. While getting out of bed one morning the old injury of the SI ligament ripped again.

I unfortunately have irreversible damage from the fluoroquinolones.

Supplements have come a long way. For those who aren't vegan "Joint Vibrance" may be the best available. Some high quality cod liver oil can also help. These can be very helpful in restoring ligament, tendon and joint health. Vegans? I use Bio Sil, hyaluronic acid, MSM and a Sun Warrior Collagen powder in blended drinks.

Can you place your palms on the floor? Not touching your toes--your palms.

If I were you, I would get an alignment by a "good" chiropractor, then do something to help myself.

A video by Jessica Valant, a physical therapist and Pilates teacher showing how to stretch out and release the piriformis muscle.

youtu.be/m9BmYr07nvU

Currumpaw

Yeah, I'll look at the stretches. I used to be athletic so I'll need to get back into doing these along with stuff like planks to strengthen my core.

There is a Chiropractic college about 40 miles away (ugh). I went there about 15 years ago because my pelvis got put out of alignment because... reasons. They don't do any of the weirdness that people criticize Chiropractors for.

I'll just stick with the exercises, stretches, heat towels, and heat cream to treat it. Not to mention the cool kneeling chair that I should be buying soon. I showed it to my girl in Thailand. She thought it was very small but I told her man they are surprisingly comfortable. :)

Hey FinalBossMatt!

A very good chiro kept me from a surgery that was judged to have a 50% chance of helping me but also I'd lose range of motion.

Are there fluoroquinolones in your past?

I wish you the best.

Currumpaw

I had to look up the F-word so that would be a no. It doesn't look like I would ever need them, especially since I'm allergic to some antibiotics.

Hey FinalBossMatt!

Cipro and Levaquin are the most popular to use. My uro liked these drugs so much that he used them both together!

Currumpaw

monte1111 profile image
monte1111 in reply to Currumpaw

I had a reaction with Cipro and coffee. (after just a few days of Cipro) Have not been able to drink coffee for many, many years now. Won't tell you what happened when I drank Kahlua.

Currumpaw profile image
Currumpaw in reply to monte1111

Hey monte1111,

The fluoroquinolones can cause irreversible damage to joints, tendons and ligaments. Those who have had fluoroquinolones have twice the incidence of aortic aneurysms.

Search on line. These drugs have not only destroyed lives but have even killed.

Currumpaw

Shooter1 profile image
Shooter1 in reply to Currumpaw

Hands palm flat on floor?? Some days I can touch my ankles...

Currumpaw profile image
Currumpaw in reply to Shooter1

Hey Shooter1!

A little at a time will get you there before you know it!

Currumpaw

monte1111 profile image
monte1111 in reply to Shooter1

I can do it, if I bend my knees.

MateoBeach profile image
MateoBeach in reply to Shooter1

Knees, Ankles or floor. Doesn’t actually matter. It is the (gentle) stretch that helps you wherever your personal geometry is at

MateoBeach profile image
MateoBeach in reply to Currumpaw

Very tough lot amigo. The exercise lady is worth watching even with castrate T. Chiropractors have to eat too. Make you feel better anyway.

I once had a pain in m MY ass,

I hoped it would go away fast.

But it stayed while a long time had past,

and seemed it might forever last.

But I happened to get ADT,

which made it fade and whoopee!

It turned to an unnoticeable mass.

That was a long time ago,

2015, or so.

It stopped and failed to grow,

Thank goodness I'm still in the show!

And we are glad you are here too, just so you know.

Hey there, had sciatica really bad long time ago. Only thing that worked was a muscle relaxer named..cyclobenzaprine, and epidural L4-L5. Plus a good Chiro that would use diagnostic Tools for alignment of my spine, hips, and neck.Best of luck to you!

Oh yeah, cyclobenzaprine resides on my end table and in my carry bag...just in case.

LOL, how about any Gabapentin at night? Helps my wife’s pain a lot. It makes some people tired though..just depends. At least it would let you know if it’s nerve pain?.Hope you get through this 👌.

No joke here....look up “lazy butt” on the net. It could be the issue.

monte1111 profile image
monte1111 in reply to Wahoo_

You win.

😂

Try "prescribed" Duloxetine (Cymbalta) Hcl Dr Caps 30mg once a day (for leg/nerve pain). I've had every kind of lower back and leg pain and this works.

BTW My ex-wife wasn't a pain in the ass..... she was a pain all over....and thank goodness it's all over....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 04/13/2021 10:29 PM DST

I had very similar symptoms last year and was worried it was a met in my lumbar spine or sacrum. (Of course.) went for a MRI with contrast and found it was not cancer but a compressed spinal nerve root from herniated disc and other degenerative spine damage of an active lifetime. Had microscopic decompression surgery 6 weeks ago and progressing. Happy it is not cancer. Bottom line is you have to get full MRI imaging to know what is going on.

monte1111 profile image
monte1111 in reply to MateoBeach

Best answer prize.

My back pain started around the time of my Biopsy and RP. Naturally, I thought it could be from PC. T2 weighted MRI showed possible Annular tears from disk at L5-S1. Orthopedic surgeon, Tony Mork, performed a Provocative Discogram and CT after showed Toxic Annular tears in both L5-S1 and L4-L5 was responsible for my pain. I then had minimally invasive surgery to clean the necrotic tissue from my disks and it has helped to some degree. My diagnosis is Degenerative Disk Disease. There's a good u tube video on pain management presented by Dr. Ian Carroll from Stanford. Please watch that everyone with pain. 🤙

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