Bone met pain

[Rexwaterbury]

For those with symptomatic bone mets, could you please describe your bone pain? Is it constant? Worse with movement? Improved with bed rest?

Thanks in advance.

Rw

[tom67inMA]

I expect you'll get a variety of answers, including two from me.

My ribs hurt occasionally. They are a known hotspot for me that never cleared up. I cracked at least one prior to diagnosis. It's hard to say what makes the pain come and go but humidity and a lot of activity are probably the top suspects. Laying on them, or resting my tablet on them while lying on my back can make them uncomfortable. Which is to say, sensitive to touch.

I also have something going on in my lower back/sacroiliac joint. This involves the sciatic nerve, so I can get significant pain shooting down my leg at times. Around my original diagnosis it was excruciating painful to sit, likely because that position pinched the nerve. It's vastly improved since then, responds very well to Celebrex, but has flared up again with another round of chemo. Sitting is generally okay, but now it's not a fan of running up hill, but then again neither are my lungs at the moment.

Things are almost always best first thing in the morning, so resting definitely helps. The meds that seem to work best change regularly. Some days an NSAID is a miracle pill, other days it can be oxycodone, or clonazepam, or medical marijuana. Some days an antihistamine helps. Pain can be complex, particularly if you have a tumor inflaming and pinching a nerve and a tense muscle adding pressure to the situation. Stress can also affect pain perception. Marijuana in particular is great for its ability to make me not care about pain.

Over the long term, exercise and shrinking tumors are the best solution IMHO.

Wow, this wasn't suppose to be a book but guess I've given the topic a lot of thought.

[MateoBeach in reply to tom67inMA]

Sorry to hear about the burden of pain you must deal with Tom. Terrible disease. We are standing with you when it hurts.

[tom67inMA in reply to MateoBeach]

Thanks! The pain is generally well controlled at the moment, but I do appreciate the sympathy for the times when it wasn't.

[2dee]

As you already know I can only report MY own experience. I read your profile.

In 2017 I got flu like symptoms, they slowly went away and left me with extreme cough for 6wks. I developed extreme pain strangely migrating throughout my body. Lost 55# and a couple months later finally Dx stage4 fully metastasized over entire skeleton, PSA 1300+.

Nothing helped the skeletal pain. I believe it was the PCa chewing away. Started Casodex and Lupron and dropped PSA to<2.

Heavy into Norco, CBD, THC, and pain diminished. Cut back on all pain meds and pain still kept falling. Bone scans 1 1/2 year apart showed bone lesions reduced by about 1/3.

I believe that the ADT slowed the aggressiveness thus reducing the pain to tolerable.

After about 2yrs PSA starting to climb again, now at 9.1. Started Xtandi a week ago. Hoping to keep the PCa slowed as long as possible. Not looking forward to the very extreme pain again when it gets out of control and starts chewing aggressively again.

I'm exercising, getting sleep, and living with a better QOL as long as I can make it last.

2Dee

[MateoBeach in reply to 2dee]

Your courage and attitude are inspiring. May you live long with chewing gone from the scene.

[EdBar]

I experienced two types, one was pretty extreme when I had a Lupron flare after being diagnosed, I went forward with a Lupron Shot plus Casodex without giving the Casodex the usual two weeks or so that it takes before getting a Lupron shot to avoid the flare. I just wanted to get my treatment going. It was pretty bad for a couple days, I remember counting the hours and minutes before the next dose of ibuprofen could be taken.

After that for the next couple of years the mets in areas like my pelvis and shoulder would get very sore and ache after too much walking or physical activity. Rest seemed to help along with OTC pain relievers.

That pain has since quieted down, after aggressive treatments have seemingly hammered my cancer into dormancy. It’s been 6+ years since dx.

Ed

[j-o-h-n]

Only on days that end in Y....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 05/30/2020 11:35 PM DST