Starting the pain stage.

[GoEZ]

OK guys, Need some advice. Several months ago I did something stupid and cracked a rib. The X-ray showed some odds things and I passed that off to the cancer center. I had a bone scan that showed a large black dot around l4 and l5. Two months ago my hips started get stiff and affected how I walked, a month later leg pain going down my right thigh. Now I have lower back pain, thigh pain, and hip pain. It’s not drop to my knees killing me pain but I’m very uncomfortable. Sleeping getting harder, fatigue is getting worse and sitting for more than 20 minutes start the pain cycle. Any advice on what to do now? I’m eating OTC pain pills. Thanks for any secretes you can pass on.

[BarronS]

I would think just radiation to spots that may be giving you the pain, after you get a scan. If that doesn't help to reduce the pain, then its going to either be some marijuana if you are in a legal state and then some opioids.

[BarronS]

Do you ever find yourself getting more negative thoughts while smoking? I can't do it because I find myself thinking too deeply and trailing off to negative thoughts.

[Hidden in reply to BarronS]

Have heard that the suppository method changes those kind of effects. Don’t know from experience. I do have a friend that uses the refined oil in a capsule that swears he has no side effects.

[Fairwind]

When were you diagnosed ? Are you now castrate resistant? What is your PSA now ? What are you doing to control your cancer if indeed you have cancer....?

[GoEZ in reply to Fairwind]

Ive had pc since 2010. Iv done well till about 4 to5 months ago. Thats when things start to feel weird and hurt. This is the first time ive had long peeoid of pain. I think i startwd a new phase. I have sone wwll so far.

[Fairwind in reply to GoEZ]

What was your PSA 6 months ago and what is it now ??

[savingdaddy in reply to GoEZ]

Your PSA?

My Dad is along this same path 10 years and started to have different trouble 5 months ago.

[GoEZ]

Thanks I'll look into it

[GoEZ]

Sounds like fun. I could never do a back flip but if pot helps I'll give it a try.

[Kaliber in reply to GoEZ]

Back flips are way better than flipping out from pain yayahahaha. If you are in a legal state or can get to one easily, get some 1/8ths of several species ,both India and sativa. Experiment with all of them to see what works best for your needs. Like they say, everyone is different and these days many strains can be accidentally miss characterized.

[pilot52 in reply to GoEZ]

Trying to get my medical back on Xtandi with the FAA boy if I was doing this stuff they would really be proud of me..!!! The controllers would keep asking me why I could not stay on course or altitude.....and would I please quit singing over the freq! Blue Skies a Grounded Sky King....

[Tall_Allen]

Targeted radiation (SBRT) to your spinal met may bring you a lot of relief. You only need one or two treatments.

[Kaliber]

2nd what he said. I use hydromorphone (dilaudid) for break thru pain and it’s very effective / powerful.

[pilot52 in reply to Kaliber]

I was on liquid hydromorphone for a short time...pill form did not work....you are right when you say powerful

[YostConner]

You need a palliative care member on your health care team. He or she should be able to prescribe you oxycodone or fentanyl patches or some other drugs that can help you with breakthrough pain.

[AlanMeyer]

Another possible radiation option that might be worth looking into is Xofigo. It's an injection of a solution of radioactive atoms that bind to rapidly growing bone (which is what bone metastases are.) It treats metastases in all of the bones at once.

I have no idea whether it's better for you than SBRT. You'll have to ask a specialist.

Xofigo was originally developed to fight bone pain but in trials it was learned that, for men whose cancer is mainly in the bones, it can also extend life. That may be true of other forms of radiation like SBRT too. I don't know. I don't know if anyone knows.

Finally, I suggest looking into Lu-177-PSMA. It's another radiation treatment but it targets cells with prostate specific membrane antigen by binding atoms of radioactive lutetium to cells, almost all of them tumor cells, that have PSMA on their surfaces. This can treat both bones and soft tissue with cancer. A lot of men don't have much PSMA and so don't get much or any benefit from the treatment but, for men that do, the results can be dramatic. Typically the clinic will test a patient for PSMA first and only apply the treatment if a fair amount of it shows up in the scans. It's not FDA approved yet in the U.S. so you would either need to enter a clinical trial (there are a number of them), or go to Germany or Australia, or maybe other places now, for the treatment.

Best of luck.

Alan

[GoEZ in reply to AlanMeyer]

Thanks. This gives me somethings to ask the doctor.

[Bebby1]

I’m sorry you have painOTC won’t cut it with bone pain

Slow release opioids work for my husband

Please don’t put up with pain

[GoEZ in reply to Bebby1]

Thanks im finding this to be true. I now have some oxycodon.

[Pavier]

Mu hubby had pain in his back. They did a pelvic MRI in December and found that the cushions between the vertebrae were disintegrating due to general ageing. Although there were cancer cells in the lower spine, they did not think these were enough to cause the pain. Gave him morphine patches (Fentaynl). He wore the patches for about a week and took pain pills. As soon as he started Zytiga, the pain went away and the Oncologist was surprised that he stopped using the patches. He is now also on an ACTINIUM 225 trial and doesn't have much pain unless he has lifted or moved something heavy. Most bone mets in upper body are just about gone. The ACT 225 has made him irritable and grumpy this week but better than the alternate options. Still working on the lower half of the body. Somethings for you to consider for the pain and find out about a trial of nuclear medicine.

[GoEZ in reply to Pavier]

I had the same reaction on zytiga. my upper body hurt so bad i couldn't left my arms above my shoulders. Two weeks after starting zytiga pain went away. It been almost a year with no pain. Just the last few months with lower body pain. Thanks

[Hidden in reply to Pavier]

Can you tell me where your husband is getting Actinium 225? My husband is at that stage of significant pain from cancer and rib fracture. Taking morphine and Dilaudid.

[Pavier]

Whoops I see I am logged in as hubby but anyway.

[j-o-h-n]

To me it sounds like sciatica. But what the hell do I know?...I thought 8 tracks were the wave of the future.

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 06/03/2019 6:26 PM DST

[monte1111 in reply to j-o-h-n]

I had a chrome 4 track player in my '59 Chevy that I was really, really proud of. Sun reflected off of it and you couldn't see where you were going half the time. But who cared.

[j-o-h-n in reply to monte1111]

See if you drove here in NYC in those days they would have stolen it and therefore no reflection... You just had to be in the know in those days...

I knew and yet they stole my 65 vette..... 😒🤢😒🤢

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 06/04/2019 6:13 PM DST

[Tjc1]

Wake and bake!

[GoEZ]

Ive had sciatica before, that seemed to hurt more with movement. the pain i have now comes in waves. it gets out of control weather i move or not. sitting and laying down are a nightmare now.

[monte1111]

I could use something to get rid of the Ants around here.

[j-o-h-n]

Hmmmm sorry to hear that..... Now don't kill the messenger... but did you try Acupuncture?

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 06/04/2019 6:09 PM DST

[GoEZ]

yes not much help

[Zetabow]

I have Rib, back and leg pain, Doc put me on Morphine last week (It's not really working) I will see a pain specialist next week, keeping my fingers crossed that he can help.