Bone Pain from Prostate Cancer

[cesanon]

Please describe the location of your prostate cancer bone pain, subjectively what it feels like, and what you do to moderate at, or otherwise respond to it?

What do you recommend. What do you not recommend?

[JamesAtlanta]

When I was first diagnosed, I had tremendous pain in the spine area (T8 vertebra). It started off like a pulled muscle (it first became acute when I was driving a golf ball). So my doctor gave me a muscle relaxer. Kept hurting more, so he suspected a pinched nerve and gave me a steroid. Became so painful I was taking 4 Advil at a time and having to lie on my back on the floor to get some pain relief. X-ray showed nothing. So doctor ordered an MRI - that’s when they found the cancer slowly cracking the bone in one of my vertebra.

The pain was ongoing. It did not pulse. It did not get any relief by massaging the area, which is why I thought I might have a problem beyond a muscle pull.

I had to start opioids OxyCodone and OxyContin. They gave me instant relief. Fortunately Firmagon stopped the pain within a week and I was able to stop the pain meds. I also had radiation to the spine for palliative reasons.

I found the pain excruciating. So glad I have not had that level of pain since.

Hope this helps you. There are a number of our brothers here that are much better at discussing pain - they are a great resource.

Best regards,

James

[Hidden]

Before I started treatment, I had a lot of pain but didn't know why. I tried Cannabis Indica. I can't say enough good things about it. Great pain relief and I slept like a baby. I remember waking up in the middle of the night feeling like I was getting a full body massage. It relieves pain and reduces inflammation. It's not addicting and there is no risk of overdose. I don't know If you are somewhere that you can get it.

I've also used Tapentadol which is on the safer end of the opioid spectrum. It's similar to Tramadol only without the serotonin re-uptake inhibitor. That worked fairly well too.

I think ideally, you have more than one drug you can use and if possible different methods of administration in order to maintain the effectivity and reduce the likelihood of building up a tolerance.

There are also pain management specialists you can consult with.

Hoping things work out for you. This disease is tough to deal with.

[Walkingwell]

I had sudden and severe back pain in muscle and nerves near T7in May 2017 - initially given a shot of morphine, then X-rays and CT scan found nothing. Suggestion was maybe I'd got an injury playing soccer. All changed in August/September with diagnosis of Stage 4, Gleason 9 PC, meta to T7, pelvis and ribs. T7-related pain off and on since then, not as severe as the first burst. Worse in mornings. Lying down helps but so does movement, walking, swimming, running - when possible. Have also taken many Calonal and Volterin tablets (NSAID). MRI in Jan. 2019 showed mets on T7 like two needles pushing into spinal cord. MRI in July 2019 showed slight increase in T7 mets. Had 10 days of beam radiation, ending August 2nd. Pain is reduced but not entirely. I feel it will get better. Now taking 500mg Calonal twice a day. Morning worst but bearable. Movement helps. Long walk today, swim tomorrow. Love and sympathy also helps! Five days after finishing radiation treatment I went to the Himalayas, as a poet-in-residence (which involved much lying down in a relaxed posture).

[2dee]

Excruciating pain started with ribs then jumped around, knee, left shoulder, hip, low back, right shoulder, upper ribs, neck, upper back, and on and on. No common pain med seemed to touch it. Started opoids, increased dosage, no good. Down 55lbs from 215 in less than 3 months.

All before PSA 1300+ and Dx of stage4 fully metastasized throughout body.

Started Alkaline Therapy which slowed PCa down by 70% in 12 days, then Lupron. Pain subsided a bit but took CBD oil and then finally some THC lozenges before I got a real handle on the pain. Cut my Norco down to 2 a day from 8+ I think primarily due to CBD. PSA between 1-2 now, low pain overall, starting to gain strength due to finally able to sleep again after many months without. 77yr old, on this journey for over 21mos now.

PCa no longer aggressively chewing on my bones so pain tolerable.

Once it can be slowed less pain follows.

Continuing meds, treatments, pain control till something is no longer effective and then will make the next best choice.

Work at it. Read everything. Join support groups. Try anything YOU judge may help survival and QOL.

2Dee

[Cheerr in reply to 2dee]

Hi 2dee,

Can you explain what’s alkaline therapy in brief? I haven’t really heard of it before or on the forum. Sounds interesting.

[2dee in reply to Cheerr]

I'm Dennis, born 1942, California, Heart Bypass in 2001, Dx advanced Stage4, fully metastatized Prostate Cancer, 28 Jun 2018, with weeks to 6mos to live statistically (Over a year ago!!). Lost 55lbs Jan-Mar 2018. Extreme pain 24/7. Started the AT, ADT, diet, whatever and still daily researching of logical or reasonable therapies.

In reply to your request for Alkaline Therapy (AT) process.

I desparately researched for some logical therapy I could start immediately in 2018 before they finally gave me the Dx of Stage4, Fully metastized, PSA 1300+ Finally started Bicalumide and later Lupron ADT 6/29/18.

I found a number of encouraging pages with Alkaline +Prostate +Cancer.

Some anecdotal "cures" but since we are all so different chemically it may be no more than that.

I found no hard recipe nor dose. Some "hit it hard" to start and then nothing, some judged a long term strategy is best.

MY RESULTS: First cycle was 12 days "on" and 7 days "off". Later this cycle was modified to 10 days on and 10 days off. Between day 8 and day 12 I felt physically better than I had in years. No supporting numbers, just a feeling.

I did a PSA just before starting at 1303 (and climbing a point a day) and then just after stopping first cycle PSA at 362. (70% drop in 12 days???)

I started on Bicalutimide and then Lupron before my second "AT cycle" so couldn't confirm any longer what substance or treatment exactly drove my PSA down. Likely all of them plus diet and lifestyle change. PSA now between 1 and 2 since last Sep, 2018. There is NO magic bullet but things can be slowed down or the end hopefully gets easier and further away.

MY Current AT Recipie:

1 tsp Arm Hammer Baking Soda

1 tsp Pure Maple Syrup (for the sugar)

1 cup filtered or bottled Water

DIRECTIONS: Stir together well and drink one cup AT LEAST one hour BEFORE first meal and another cup AT at LEAST one hour AFTER last meal at night.

That's, two cups a day for 10 consecutive days and then STOP for 10 days. That would be called a cycle or treatment. It is important not to do more than a 14 day cycle. I also stopped for a month when I though I MIGHT have some symptoms from AT. No problems now with one 10 day cycle a month.

Can I guarantee you it will will work for YOU? NO

My experience and the experience of friends I have recommended AT to is very positive for many types of cancer. I personally believe that PCa though is a bit more susceptible. My results convince ME to continue for the foreseeable future with one cycle a month.

Do your own research, learn all possible, make your own judgments.

Changing diet and lifestyle may help or may not BUT what you are currently doing allowed you to become a host? The docs and their SOC Standard Of Care have said they have nothing to beat the beast yet so what have you got to lose?

2Dee

[Jrb70 in reply to 2dee]

I would like to get CBD for my husband who has small metastases in left hip bone. Could you please tell me which strength and dosage of CBD oil you are taking for pain? I am so sorry you are having to endure this.

[2dee in reply to Jrb70]

I have evolved to 100-200mg PER DAY.

I buy 3500mg of CBD oil in a 1oz (30ml) bottle in Olive oil mix. About $200 from diamandCBD.com at 1/2 price. Quality and price varies by vendor.

I put 3 drops each on 3 halves of oyster crackers under my tongue. Three times a day. Other strengths. just do the math to match YOUR needs.

I started with 350mg in a 15ml bottle and added dosage and schedule till I controlled enough of my pain to be tollerable.

THEN I cut back on the opioids down to 2 a day. Can't seem to be able to drop them but I got rid of 6 a day or so. Maybe good enough.

Now need to cut the expense for CBD since insurance won't cover.

2Dee

[Jrb70 in reply to 2dee]

Thank you so much.

[Hidden]

I went through piles of pills to get relief, and ended up using Anti-Inflammatories as the base, and added paracetamol if necessary. When things were bad, I was using 3 x 100mg Celebrex a day (celecoxib - there are cheaper generics). Basically, I found the "usual" pain killers (including opiates) had bad side effects and were not as effective as the anti-inflammatories. I now use 25mg of Diclofenac 3 times a day as it is dirt cheap. These take about an hour to kick in, then last for 6 to 8 hours.

Bones with cancer in them swell with "rot" and also cause swelling in the surrounding tissue. Vertebra can develop bumps and "spikes" that can be dangerous to the spinal cord (MRI will show these), but these will go away a year or two later as the vertebra do slowly get back their proper shape.

It is the swelling that causes most of the pain. Pinched nerves are another story, and need professional attention. The good news is the pain subsides rapidly once the ADT things like Lupron kick in, and the bones that are hurting like hell now will probably not hurt at all a few months down the road (but others may take their place). The cancer tends to invade bones that have had some past stress - like a heavy bump that bruised the ribs, and even the thigh bones of those who read books on the toilet! Good luck!

[larry_dammit]

Mets in spine and ribs. Doctor told me not to pickup more than a gallon of milk. I’m a old self employed guy that’s used to doing it my way alone. On morphine and dilatin. When I over do I add a extra dilatin pill and wait for a few days to settle down so I can do it again 😜😜😜

[cesces in reply to larry_dammit]

"Doctor told me not to pickup more than a gallon of milk."

Please explain what that means?

[larry_dammit in reply to cesces]

Mets in spine and ribs. Doctor is afraid I’ll break a bone and not be able to heal. I pickup more of course, changed battery in my old truck two days ago ,paying for it now. Just the monster sticking the knife in my back and ribs when I breath 🤪😡

[leo2634]

Before I waa diognosed I had pain in my lower pelvis area that was hurting constantly never let up not even for a few seconds. I went to my family doctor who prescribed a muscle relaxant it did nothing pain was getting worse at that time he also sent me to my now current Urologist because of elevated PSA. After all of the usual test we have all endured Cancer Mets were the cause of my pain first Lupron shot and pain was gone by at least 90 percent by the following day. I'm now on Zytiga,Eligard injection and Xgeva injection. 20 months no pain other than the getting old stuff. Never give up never surrender. Leo

[Jbooml]

I was diagnosed with a highly advanced stage 4 PC a year ago. I had florid cancer growing on my hips spine and ribs....I seemed to dodge a lot of the pain most endure but I did have crippling arthritic like pelvic pain, leg extensor failure and years of lower back pain. i'd been avoiding a diagnosis for years until pissing became such a nuisance I relented to my wife's pleas. I'm fine now....one thing I should mention is just after starting eligard my retreating cancer caused so much weakness in my pelvic girdle I had to be careful not to turn rotationally or change direction quickly lest I end up broken on the floor or worse...steps...which terrified me. I had a fall before my diagnosis 6 months earlier which caused me so much injury I thought I'd broken my trochanter....I shudder remembering the day. Its all history....i feel like a kid now....jumping through rock gardens on hikes and clambering up and down the steepest of hill and vale...not trying to brag rather emphasizing the mighty power of the T and steroid blockers and ADT....Others have recovered through other means but I can't thank my MO enough for convincing me to take the first steps toward recovery.

I never took so much as an aspirin throughout the entire ordeal. I don't like taking anything except good food and a very little booze but I am interested in the CBD offerings as they seem to have more than anecdotal approval by users.

Hopes this helps those who are where I was a year ago.

[tom67inMA in reply to Jbooml]

Thanks for sharing, and thanks to cesanon for asking the original question. I've been trying to figure out how much of my aches and pains are actually bone pains vs joint pains that have been enhanced by the cancer, Lupron, Xgeva, etc. The only obvious bone pain I've had is when I was leaning over the edge of the bath tub dealing with a hair clog and I heard my rib go "CRACK!". That really hurt, and applying any pressure to the rib hurt more.

My other aches and pains tend to get better with rest, and sometimes are like itches in that scratching the area will give temporary relief. Still, they tend to be in areas that were lit up on my bone scan, so some cancer augmented inflammation is probably at work as well.

Totally agree with feeling like a kid. I'm moving better than I have in years. Part of that may be due to reduced inflammation due to taking prednisone and celecoxib. But, if the cancer was out of control, that would be like putting a bandaid on a gunshot wound.

[abmicro]

My worst pain was from cancer on a pelvic bone that cracked after a minor car accident when somebody hit me from behind. It was enough to break it a little more and next day I could not walk from pain. Fracture started to heal in 3 days and pain was slightly less. Had to use wheelchair and walking cane. Cancer showed there before 6 years ago and I radiated it, but but nobody wanted to radiate it again because I already radiated that bone 6 years ago. Consulted and thought about surgery to remove that painful bone, but eventually Stanford said it was OK to radiate. That stopped the pain.

[Muffin2019]

Had 6 mets, radiologist asked 2 years ago this year if I had bone pain , never had any and on lupron. Lucky they have had improvement and are healing so far, work part time on my feet and walk during the week at least 3000 steps outside or in stores or malls . Walking improves bone mass and strength also take calcium daily.

[immunity1]

A great question. After having an aggressive Gl9 tumour diagnosed in 2010, it was in soft tissue and was painless until I developed a met in pelvis 1y ago. Treated with palliative RT (8Gy) which alleviated the pain but the metastasis is more widespread now so I will have more RT (?20Gy) next week and then start docetaxel therapy. Currently taking 4g paracetamol daily which takes the edge off it. = Rob.

[Zetabow]

My first indication of a problem was pain in thighs and ribs last Summer, diagnosed Nov stage 4 Gleason9 and PSA 1386 and Mets to every bone. ADT and Chemo has got the cancer under control but it did a lot of damage to my Femurs (Got into the Marrow) and need Opiods, Neurontin and a cocktail of other drugs.

It's a very deep constant pain in the legs, if I miss step or put standing weight they wrong way it can be very intense. Sometimes pain flares in places I don't normally feel pain like my arm, this morning it was my upper right jaw, it lasted about 20 seconds, grew almost unbearable then faded away as fast as it came.

Even with pain killers I'm still in a lot of pain but at least I'm mobile. I try an walk up to a max of 10km a day and recently tried swimming but the pain in Ribs restricts movement so I look like a total novice, ironic that I was top swimmer in my youth lol. Weirdest thing is when I'm doing Breaststroke and kick my legs it feels like a big flap of skin is hanging off my ankle even though nothing is there.

Be as mobile as you can without overdoing things, my body lets me know if I went too far the following day, I've now got a pretty good idea of what my limits are.

[cesces in reply to Zetabow]

Disregarding the high intensity of the pain, is the pain sharp, dull, or something something in between?

[Zetabow in reply to cesces]

It's dull always there in my legs, it can be sharp if I move wrong. In mornings it's bad think I'm not moving as much as I used to in my sleep (if I move I wake up) so in morning when I get up the legs are very stiff and painful. Ribs only hurt if I move wrong or lift something.

[Cheerr in reply to Zetabow]

Hi Zetabow, since you had bone marrow infiltration on diagnosis and post chemo your blood levels improved significantly, I assumed it meant the cancer in marrow has reduced and is working better now?

But do you think chemo affected the marrow and hence you have sharper pain in femurs now?

[Zetabow in reply to Cheerr]

I wasn't producing platelets and needed regular blood transfusions etc.

I don't know the answer. I was hoping the Chemo would help reduce the pain but it didn't, I'm very happy to get my PSA from 1386 down to 0.04 in 6 months. The Oncologist told me I couldn't of hoped for a better result considering my condition at the starting point. I see him again 1st Nov, hoping nothing has changed.

Keep Strong.