My father has extreme pain in his legs - Advanced Prostate...

Advanced Prostate Cancer

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My father has extreme pain in his legs

Weezer513
Weezer513

Hi all. Just enquiring about leg pain, my father is stage 4 with bone mets and having extreme pain in his legs (mostly at evening/night). He does go to work during the day and is on his feet walking. He is currently taking zytiga/prednisone and Lupron shots. I feel like this extreme leg pain started with those meds. He is taking OxyContin 10 mg 2x a day and oxycodine 5mg in between no more than 3 a day he is allowed. He said the only thing that helps is Aleeve but dr told him to stop taking it. I also have the RSO/CBD oil that he tried last night. He reports that it made him dizzy but didn’t do anything. He is only suppose to start with a rice sized amount. Pain dr said cbd is ok to take with all other meds. I don’t know what to do. Has anyone been in a similar situation??? Thanks in advance. 🙏

45 Replies
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Rs0 will make u more than dizzy....that aside ...get him to elevate legs....if hes on feet all day he need to rest some ...stage 4 is when u slow down a bit ...the lupron has taken away testosterone wich effects both bones and muscle...unless hes on gator blood like some in here and bikes or runs ad nauseum....his legs are gonna ache....just my 2 pence worth...others will chime in....bw

What more from the RSO? He had no other affects from it. All everyone has said is that it will knock you on your a** lol but it didn’t work like that for him.

gregg57
gregg57 in reply to Weezer513

Are you somewhere that's legal for medical cannabis? If so, I would recommend indica strains of cannabis. I use the flower in it's whole form so you get everything. I make what's called a "Leary Biscuit" rather than smoke it.

My understanding is you need both THC and CBD. Indica strains do not get you high, just relieve pain and great sleep med.

It may not be enough for him, but worth a try if you can. It has better side effects than opioids, that's for sure.

I just googled Leary Biscuit! Super cool gregg57

Weezer513
Weezer513 in reply to gregg57

We are in NY and he is being treated at Sloan in NJ not sure 🤔 but I think we do have medical marijuana now but I will check it out thank you

gregg57
gregg57 in reply to Weezer513

New York is a medical cannabis state. Anyone with cancer should be eligible.

WSOPeddie
WSOPeddie in reply to gregg57

I had to google 'Leary Biscuit' too.

marijuanamythbusters.com/20...

I'll have to try that. NY may be a medical marijuana state but it seems they have goofy restrictions on what dispensaries can offer, judging by my online leafly visit to one of their dispensaries. No 'flower' offered. Guess they want to protect your lungs from nasty pot smoke. What a goofy state. I'm glad to be from NY.

gregg57
gregg57 in reply to WSOPeddie

So glad I live out here on the cannabis friendly west coast. Oregon has a dispensary on just about every street corner and also plenty here in California.

But it's so easy to grow your own and if you don't use a lot, two plants will last you a long time. You can also make some canna butter and freeze it. Lots of ways to go.

I try to use it sparingly, but it is a good medication.

WSOPeddie
WSOPeddie in reply to gregg57

I have my Medical Marijuana card in AZ and the dispensaries are good but I am not allowed to grow. Recreational use legalization is on the November ballot. If passed that would allow me to grow. I wonder if passage will cause a near term shortage in the dispensaries. Maybe I should stock up.

gregg57
gregg57 in reply to WSOPeddie

I can't imagine a shortage. From what I've heard, there's a big glut because the growers overestimated the market (at least in the recreational states). Maybe different there in AZ. I have to say, the prices are on the ridiculous side for a weed. Here's an article about the glut in Oregon, although I think the same is true or was true in other states (not sure how old this article is)

rollingstone.com/culture/cu...

Is he getting imaging to see if the problem can be resolved? Also recommend going to a specialist in pain if he is not getting the meds he needs to manage the pain. Here's some information:

asra.com/page/44/the-specia...

Weezer513
Weezer513 in reply to gregg57

He had his first phone meeting with the pain management today and what I wrote is the current protocol. She also said maybe Cymbalta but I am not like the side effects of that particular drug

Weezer513
Weezer513 in reply to gregg57

He had xrays and bone scan. Bones aren’t brittle so that was good. He does have mets in his femur. I believe all over but they are small. He also has a lot of arthritis

Maybe he should also get an ultrasound of his legs at a Vascular Surgeon's office. Could be related to venous circulation. In the meantime he could also try wearing compression stockings.

I believe they ruled out any DVT but I will forward all possibilities to my parents. Thank you 🙏

I have leg pain.... 2 tylenol helps

BTW how old is he?

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 08/15/2020 7:53 PM DST

Weezer513
Weezer513 in reply to j-o-h-n

He is 67 years old

j-o-h-n
j-o-h-n in reply to Weezer513

He's just a kid..... I wish him well with his pain in his legs...

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 09/15/2020 8:42 PM DST

Weezer513
Weezer513 in reply to j-o-h-n

Lol yes a big baby at times, won’t eat anything green! Trying to make him eat a little better but as of now no appetite due to pain. Thank you 🙏

j-o-h-n
j-o-h-n in reply to Weezer513

Boil your greens..... top them off with pure olive oil, lemon juice and black pepper. Eating that will make him forget about his pain....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 09/15/2020 10:58 PM DST

Leg pain can be caused by compression of the nerves innervating the leg when they emerge from the spinal cord. He should discuss to have imaging studies to determine if there is compression of these nerves. If there is compression and it is not caused by metastases he could get some relief by having an epidural injection of steroids depending in the location of the compression.. If there is compression and it is caused by metastases he could get relief with direct radiation of the metastases..

Weezer513
Weezer513 in reply to tango65

Yes I believe he is having a more in depth mri of his spine. My father is not keen on spinal injections due to complications from his epidural back when he had his R hip replacement. He never clotted and had spinal fluid leaking and then had to have a blood patch done. But if the pain starts to be worse it still might be an option depending on the cause I assume

tango65
tango65 in reply to Weezer513

If there are nerve compressions he will need to consult with an orthopedic surgeon to determine if surgery is indicated.

Best of luck!!

Weezer513
Weezer513 in reply to tango65

Thank you 🙏

Hi, I had severe and I mean severe back pain due to mets in my spine. Had leg pain too which drove me mad. Pain specialist prescribed me 25mg fentynyl patches changed every 3 days works wonders able to have a decent life walking around now. Hope this helps all the best.

Thank you 🙏

I too had severe hip and leg pain, could not sit down, turned out to be the Mets in my spine and hip. It went away after the chemo got control of the Mets. Good luck to your warrior. 🙏🙏🙏🙏

Thank you 🙏 I’m thinking it’s a combination of the Mets arthritis and meds

Cannot understand a prohibition on naproxen. He does not get pain control with narcotics whose spectrum of side effects is far more threatening. His femoral mets are likely to be causing inflammation. Naproxen is for inflammation. How does the MO or pain doctor justify no Aleeve? DOES the MO/Pain doctor justify it? It is OK--no, it is often life saving--to question medical advice.

Weezer513
Weezer513 in reply to dadzone43

The oncologist told him to stop the Aleeve I’m not sure maybe because kidney function. Or to not take it as often as he was which was everyday

dadzone43
dadzone43 in reply to Weezer513

I am a physician. I look at this as a "forest and the trees" situation. There is not a lot of evidence that "NSAIDS" like naproxen cause kidney disease and no evidence I can find that NSAIDs cause or worsen PCa. We are cautioned against using them in the presence of kidney disease because it might accelerate the kidney disease. That's "might." So I would wonder: doctor are you worried that if dad takes Alleve he will need dialysis in 15 years? How realistic is that?

Does Alleve help his pain? If it does, use it would be my advice. Alleve works nicely coupled with an extra-strength acetominophen. In this case, it appears that the benefits far outweigh the risks.

Weezer513
Weezer513 in reply to dadzone43

Yes the Alleve he said is what helps him when he stopped the pain increased. Thank you for the advice 🙏

WSOPeddie
WSOPeddie in reply to dadzone43

I wondered about that too. I take one aleve every evening before I go to bed. Yeah, it might be tough on my kidneys but so what. Lack of sleep is tough on everything. Actually, my kidney function is just fine.

I agree, there are a few things that could be causing his pain, arthritis-especially if he’s had a THR, his meds and the Mets. My father was having significant bilateral abdominal pain for months between his ribs and some increased knee buckling. -it was discovered that it was due to a tumor at T6-T8. it was removed July 10 at Georgetown and he had immediate relief from the pain.

One other item that a couple docs mentioned could be contributing to my dads bone pain was the calcium leaving his bones. He was prescribed calcitrol and 4tums a day to keep his Ca levels normal. He Has been on long acting Oxy and short acting for over a year. Wishing you all perseverance.

I had similar pain in both my legs. Would wake me up through the night and it got to the point I couldn’t put my socks on. It was becoming difficult to walk. Prescribed opioids to combat the pain. Radiologist radiated my Mets at my L4 and my left hip one time with a high dose. Been pain free since and this was done in February. At the time he said that it was the Mets at my L4 that was causing all the pain in my legs. Best wishes to you and your dad through this journey.

Weezer513
Weezer513 in reply to Dale150

I feel like that might be the cause and the meds are accentuating the leg pain. He’s always been told that he has sciatica issues. He is going for a more thorough mri of his spine so hopefully that will answer questions without being bad news.

I also have leg pain mostly at night, which almost always makes it hard to sleep through. Prevalent in my left leg where I had a partial blood clot that had formed as a side effect of meds. Also experiencing edema in that leg.

A doppler scan confirmed the clot, and I was put on Eliquis blood thinner. Will be seeing a vascular doctor for a followup consult and possible treatment options.

Just some thoughts. When you wrote bone scans and bones not brittle, were you referring to a Dexiscan? Or did you mean a nuclear bone scan? If he has wide spread mets or arthritis, why a base scan is important at diagnosis of PCa, he would light up like a Christmas tree. And it would not tell you if his bones are brittle......

How long has he been fighting metastatic prostate cancer?

For the past several years I had been hobbled with foot and leg pain. I was begging to thin that it was gout..... test negative..... then I told my Cardiologist that I noticed some edema. He put me on Lasix and Potassium to reduce the reduce...... well, all the pain went away..... fluid was pressing on nerves.....

Just thought that I would share.

GD

I am not sure what kind of scan it was to check the bones but he had a bone density scan as well. So there were definitely two different tests done. I believe he does have widespread Mets. He was diagnosed in March of this year.

Thanks. I wish him the best.

GD

Welcome and thank you 🙏

I had leg pain especially when I started zytiga. It got better after a while but I thought it screwed with my muscle contraction. Magnesium before bed helped me. I've stopped the zytiga now, and my leg muscles seem to feel better, but it's hard to tell for sure.

I've put aspercreme with lidocaine on my legs. It seems to help.

Weezer513
Weezer513 in reply to Kevinski65

I have arnica oil and the RSO they said can be massaged onto the skin so might try that or with a baseless oil to start. Can I use EVOO lol 😆

Kevinski65
Kevinski65 in reply to Weezer513

Never tried it.

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