Hi everyone! I have metastatic prostate cancer which has got into my bones. I’m currently on Zoladex long term hormone therapy following a 10 month course of chemotherapy which was not that successful so we’re looking at other options. FYI I have noted quite a lot of muscle wastage as a result of long term use of hormone treatment.
About 2 months ago (after chemo had finished) I developed a weird stabbing pain in my lower back on the RHS which was sort of manageable with paracetamol with no pain issues affecting my sleep. We thought it might be a kidney issue given the location.
Recently the pain has become more apparent in the daytime and goes from my lower back pelvic area forwards to the appendix area on my torso with the addition of a sciatica like pain shooting down my left leg.
This pain was “manageable” by taking 8 x 500mg paracetamol per day - the max allowed dosage.
To help ease this pain my consultant recently gave me a single bust of radiotherapy to the pelvis in the area of the pain as there was evidence of PC in that area of the pelvic bone.
Four weeks after the single dose radiotherapy ended the pain has now got significantly worse in the daytime and is now only manageable with Co-codamol which I use the max number of tablets per day.
In the last two weeks the pain has gone off the scale at night when I am lying in bed and really hits hard from about 2am to 8am . It also affects the whole pelvis area and buttocks. However - If I get up and remain standing for about half an hour the pain does subside. I cannot take any Co-codamol at night because I use the max dose from 8am to 10pm to mange daytime pain.
From 2am to 8am I have tried ibuprofen to no avail and my consultant has prescribed OxyNorm for night time use which has had zero effect. So far only staying up standing during this time makes the pain anywhere near bearable and so I’m suffering terrible sleep deprivation.
As soon as 8am hits I can take my first Co-codamol and the pain subsides again and I can go back to bed - having missed 4 hours of sleep.
Has anyone with prostate cancer encountered a pain like this? I don’t know why it spreads outward to the whole pelvis and goes off the scale at night and why morphine has zero effect. Co-codamol is my ONLY defence but I use my 24 hour allocation of this drug just to get through the day.
Night times are now just terrible and I’m spiralling towards panic and depression because I’m not sleeping properly. I’m also “bunged up” because of using Co-codamol and have to take a variety of laxatives each day.
I have made an appointment to see my consultant but that’s not for 7 more days.
It’s so odd that co-codamol works well but morphine does absolutely nothing.
If anyone has encountered this sort of pain or can recommend a pain killer for night time I would love to hear from you.
Please help if you can.
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RobbieSELDN
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Your description sounds like pain from something pressing on a peripheral nerve or spinal column. Has your doctor ordered an MRI to see what is happening with your nerves in the lumbar and sacral region?
What kind of doctor is your consultant? Are they part of a facility with other specialists that can help with diagnosis of the cause?
My consultant is my oncologist. He’s trying to home in on the pain I’m getting without much success. I don’t think he thinks it’s directly caused by prostate cancer because there isn’t much going on in the area of the pain. It FEELS like nerve pain so thanks for your thought..
Morphine does nothing but Co-codamol works fine but with dosage restrictions so I run out at night time!
It’s so bad at night I have to stand up for 4 hours.
The description and characteristics of your pain does not indicate that it is coming from prostate cancer mets.There are 2 main possibilities (1) Continuous Lupron like med has corroded and weakened vertibrae in area and as a result the ligaments and muscles contract and cause pain. Pain getting worse with rest goes in favor of this. Warm heating pad might help in this type of pain.
(2) Possibly, some vertibra has gotten compressed and is pressing on the outcoming nerve..in this case ,you may have both muscle contraction pain as well as sharp shooting pain (nerve compression pain) In such a situation, physical therapy, warm heating pad and possibly the medication Gabapentin might help. Discuss these points with your Doctor.
I agree with LearnAll’s suggestions. Many of us are treated at comprehensive cancer care centers. They use a team approach to treating patients, letting each specialist work in their area of expertise, and discussing with colleagues at tumor board meetings.
I’ve learned that each has a narrow focus, but because of that have better insight into problems that are part of their field. I have a dozen doctors that I have seen at UCLA. It sounds like you are asking a cancer specialist to diagnose a musculoskeletal or nerve problem. Is there another specialist your oncologist can refer you to?
Hey - you are spot on. I am currently under the care of a consultant oncologist here in London who directs me to other teams should any issues arise which are seemingly not cancer related.
The consultant has been initially going in to the direction of the cancer mets affecting my pain - but I think both him and me are now coming to the conclusion this is not cancer related.
I therefore thought I'd drop my situation on the forum here to gain a clue on what people like yourself and Learnall think might be the problem. That way I hit the ground running with my consultant when I actually see him so I get things going with a referral a bit quicker.
I now totally agree with you both on this being a musculoskeletal or nerve problem - it makes much better sense. It's a direction I'm going to raise with the consultant.
Sadly our health service is not as advanced as using a team approach like UCLA - it's very consultant lead over here so you have to do a bit of digging about yourself to ensure you have an opinion / direction in mind when you meet your consultant.
Following your responses I now have a firm direction to discuss!
I’m glad we were able to provide some help. I have thought of myself as leading the team in my care, even though it isn’t as critical here’s. It sounds like you are required to do that there.
This group is a great resource, and there are members in the UK that can help guide you.
I only found this site on Thursday and I'm amazed at how incredibly useful and friendly it is. I sent my post this morning - not thinking I'd hear much back - if at all. I'm just so grateful for the responses from you and LearnAll as Im not starting cold in looking for the probable cause of all this pain.
One other suggestion that may provide some relief until you can get a good diagnosis. I have loose ligaments and have been prone to low back pain most of my life.
I find that stabilizing my low back with a brace provides relief. I use one from the Home Depot tool department when I have s temporary problem.
My orthopedist has been a great help.. Full MRIs and then epidermal injections have been great for me. I have collapsing wedge fractures in several of my vertebrae. .
Thanks for this response Nalakrats - I get what you say 100% and will add this to my list to get referred. I'll most definitely try the sleeping position - it looks a strong possibility. In the meantime are there any meds that you think can carry me over pain-wise. Co-codamol is the ONLY current saviour and morphine related meds are utterly useless and have zero effect.
The appendix pain is very apparent and so your thoughts on this are very interesting.
An older form of chemo, called Mitoxantrone + prednisone is still sometimes used for pain relief. Morphine can slowly be adjusted up (without limit if slow enough), and at some point, it will relieve the pain. Meanwhile, a fentanyl patch should keep you comfortable throughout the day. I assume you are already taking Zometa + celebrex to prevent spinal compression and fractures.
Morphine has done absolutely nothing and I’ll ask about fentanyl patches as they haven’t been mentioned. I’ve definitely had Zoe take but not with celebrex (it was never offered).
Here in the UK we might have different protocols.
Currently I’m just taking Co-codamol to keep the pain at bay. Oxynorm was prescribed for the night time but it’s just been completely of no use so I struggle through the night as best I can until I’m due the next Co-codamol dose.
At some dose, morphine WILL work, but it has to be titrated up slowly. I think it is the only opiate that is infinitely titratable. So maybe start it now even if it doesn't work at low concentrations.
The combination of Zometa+celebrex was tested in a clinical trial in the UK (STAMPEDE) so you should be able to get it there. Here's the study, if you want to share it with your consultant. Interestingly, only the combination had an effect in metastatic patients:
Hello - I'm also from the UK and similar position. Co-codamol is fine for the day but not strong enough for the night. I take a stronger version at night called Zapain (paracetamol 500mg + codeine prosphate 30mg) which works for most of the night. I also use hot water bottle.
Dear friend, I have very similar complaints and I’m waiting for an MRI to find out more. After the excellent responses you received, I will add a couple of comments. Haven't you fallen recently (even three or four months ago)? A fall can damage the lumbar and sacral region weakened by osteoporosis. A displaced intervertebral disc can affect the spinal cord, a nerve can be pinched. However, I am surprised at your poor response to painkillers. The paracetamol codeine combo you take is interesting because codeine is converted by the liver to morphine. It is an opiate. But other opiates don't work for you. However, I learned - because I suffered from it - that hepatic cytolysis (which could come from your chemotherapy) can cause difficulties in metabolizing opiates AND cause joint pain (which, in you, would rather be gathered in the sacro-lumbar joint). So monitor your liver enzymes (transaminases) and other constants, monitor the condition of your pancreas, look with MRI for a possible stress fracture or compression of a disc, or displacement, perhaps even osteoarthritis due to androgen deprivation. The most dangerous would be epiduritis, an inflammation of the tissue around the spinal cord. This inflammation could be due to your treatments or to the cancer itself which is progressing to the marrow. It would then be a therapeutic emergency. As for me, like you, I take paracetamol or a paracetamol / codeine mixture around 6.30am, 3pm and 11pm. The nights are tough, but I have noticed that I get help when I get onto a sofa with my legs held up by the backrest. To sit down, I bought a memory foam pillow with a hole that frees the tailbone. Finally, I use an anti-inflammatory heat cream and go to the physiotherapist once a week for cryotherapy (I find it doesn't have much effect). I wish you better nights very soon. Please let us know about your findings and conclusions. Friendships.
Hello friend. Thanks for your reply to me which is much appreciated.
I haven’t fallen so I can rule that out.
Thanks also for your tips on sleeping on your sofa - something I might just try for myself.
Today - thanks to the responses from everyone here I’ve written a more detailed letter to my oncologist requesting immediate referral to an orthopaedic spinal surgeon who will likely carry out a full mri of the affected areas. I think that’s the best option for me.
I’ve also requested him to review my pain control as a matter of urgency until I can meet with the surgeon.
I too am using an anti inflammatory cream at night to combat the awful night pain and I am going to attempt to take my last scheduled Co-codamol as late as possible to give me longer in bed without having to get up to stand in the middle of the night!
I’m also seeing a physio for the first time next week to see what he can do until the surgeon gets going with his prognosis.
How do you manage constipation from Co-codamol? I have it quite bad and have to use a combination of laxatives / mini enemas just to get things “moving”!
Let’s hope for a good night’s sleep tonight my friend.
Discuss having a MRI of the lower spine and pelvis to know for sure if the pain is caused by mets or by degenerative disease of the spine. If there were degenerative disease, including intervertebral disk ruptures, an epidural injection of steroids may be helpful to control. If there were mets, spot radiation may help with the pain.
I had similar pain which I attributed to bone mets which scans showed in just the area of pain. It was not horrible but enough o keep me from sleeping. A lot has changed since then so I really have no idea what fixed my problem. But now i am virtually pain free. When the pain was bad I took various oxy opiates and they worked. My oncologist had no problem prescribing them. Stop the OTC crap get the real stuff. I did not want to get addicted and for whatever reason (ADT,exercise) but the pain was a real show stopper. For whatever reason the pain is gone but if it returns I will get right back on the opiods, they really work.
Hi Robbie. I don't have any suggestions for your pain, I hope you find something to help you, it's the constant pain that is the worst. My questions relate to your 10 months of chemo, especially since it was not very successful. Isn't the normal SOC 6 sessions which would be every 3 weeks? And during that time, they should have given you bone and CT scans to see if the chemo was working. This would take about 4.5 months. Then you would continue the chemo if things were working. So how many chemo sessions did you have over 10 months and why did they continue? Thanks and good luck.
Hi - I had 10 sessions in total with a 3 week cycle for each making a total of 30 weeks which is actually about 8 months - apologies for putting 10 but I wrote my post in a lot of pain and wasn't thinking properly. At the half way point my PSMA PET scan indicated that the 2 x organs which had small appearances of PC (lung and liver) had completely gone and the none mets were down by 50%. I thought it was all going well. Sadly at the end of the 10the cycle the PSMA PET showed the liver met had returned and the bone had grown back. It was heartbreaking as I thought the chemotherapy was going to really help.
Thanks for the update. Very disheartening to have an improvement then lose it after the increased chemo sessions. I’ve just finished my third session and my oncologist now wants me to have 10 sessions instead of the initially planned 6. PSA has dropped and he’s in courage’s. Good luck.
My suggestion is try lycopenes. I have been controling pain with lycpenes since 2012. My understanding is that the pain is caused by growth of the metastasis against nerves, and the consumption of lycopenes causes increased T-cells which kill or reduce growth of the prostate cancer mets.. The consumption of low sodium V8 juice is one inexpensive and simple way to get lycopenes into your body. However, it must be consumed with some kind of vegetable oil to assist getting into the bloodstream. I usually eat 1/4 cup of V8 with a few potato chips, roughly 6 hours between each "dose". Lately I have done other things but to keep it simple, just try that. It likely is not harmful, but worth a try. If it does not work, then it shows that your problem may not be PC mets. It may work better on different types of PC and different individual cases.
Lycopene reduces systemic inflammation and slows progression of prostate cancer .Many studies have concluded this.
I get my lycopene from homemade tomato soup. A can of organic diced red tomatoes ...grind them in Mixer and then, put that in a pan and let it boil for few minutes. Strain it and put a pinch of black pepper or black long pepper powder (to increase lycopene absorption)
I also put a little Vinegar and a small amount of Ginger extract for better taste. Its OK to put a small amount of sugar if you do not like the sour taste of tomatoes.
Every after noon, sipping a large cup of tomato soup is my ritual to get sufficiant lycopene.
My dear friend I am very sorry for your discomfort but I find out that FASTING does work. Hope you will get better soon.
Robbie, I am sorry your going thru this pain, its terrible, I have been there and have severe bone mets myself. In the hospital when I had sever pain they gave me a steroid called Dexamethasone along with Morphine to control my immediate pain. The Dexamethasone also shrinks the cancer to a point. They could only give this to me for a few months because Dex is a strong steroid, now that said the side effects are; you will only sleep for about an hour at a time, however you do feel great and not sleep deprived but it did keep me up 23 hours a day. But it did help alot with the bone mets pain completely. The next thing they gave me was rounds of Xgeva once a month, this controlled the mets growing and the pain, once I came off the steroids and they prescribed me some light Hydrocodone for any pain that I still had, from time to time which I always had a little pain, the annoying type not severe, but that comes with the territory. Now 20 months later I did come down with ONJ as a result of the Xgeva so now I am off Xgeva and My OC wants to put me on Xtandi, which at this time I cannot afford, so I have to wait until April to see how much Medicare lowers it. For me I have called hospice because this is the next option to receive pain medications that fit my delima moving forward. As my OC says everyone is different and the drugs effect everyone different, some have the same side effects some don't, they just don't really know. Good Luck but steroids may be your ticket. Ask you doctors. If they cannot control the pain it may be time to call Hospice and get on their radar.Take care my friend.
Thanks so much for getting back to me. Sadly I have a bad reaction to the Dex - I had to take it during chemotherapy and it gave me some terrible psychological issues. In the end I had to take Dex via IV which for some reason did not had anything like the side effects of the oral version. I'm certainly going to persue the MRI!
Agree with LearnAll and Nalakrats and others. MRI of LS spine and pelvis needed for diagnosis. Epidermal injection under X-ray guidance will confirm and relieve spine and spinal nerve cause.Your MO is not knowledgeable about cancer pain management. Morphine is more powerful than the codeine you find helpful if the dosage is correct.(whatever is required to adequately or completely relieve the pain). The daily dosage limit applies to the accumulated dose of paracetamol, not the codeine (Co-Cotamol), or morphine or fentanyl or hydrocodone, etc. They are often compounded together but can be prescribed and adjusted alone without the daily limit. Get the MRI (preferably with contrast) and pursue an appropriate response from a spine specialist for injection and correct your pain prescription plan. Personally, I would dump that MO for another, they need to know how to manage pain in cancer patients.
I think you are correct: this sounds like nerve-pain (neuropathic) and opioids are often not so good for controlling that. Adding gabapentin or pregabalin might help. Interesting also is that the codeine (a somewhat tepid pain reliever) is doing better than the stronger stuff. Good luck in finding an effective pain specialist.
Robbie, I found my APC with an MRI looking for an orthopedic reason for my back, hip, and pelvis pain and other left lower extremity symptoms. Yes arthritis, disc degeneration and protrusions etc, however the astonishing amount of bone METS is memorable. The first thing I did in conjunction with my MO's Casodex was eliminate all food groups shown to increase prostate mets. Beer, Sugar!!!, Red Meat, Processed foods etc. I added Essex tea, Turkey Tail mushrooms and more. Exercised stretched with tennis ball piriformis massages and soft tissue work. No real pains and still enjoyed walking and golfing. There might be ways to help
I also have what I hope is sciatica. It has come and gone over the years, but since being diagnosed with PC a couple of months ago, it has been pretty constant. I had a Lupron shot 10 days ago, and started Zytiga. My physical therapist suggested putting a pillow under or between my legs in bed, and I immediately started getting through the whole night with NO PAIN. Also for past week I can go for reasonable periods of walking pain free.Try the pillow. 😉
I was in a similar pain situation and it can be put to bed. You need Pregabalin and Morphine. I took 50mg Pregabalin twice a day, and about 25 mg MS Contin, twice a day.
MS Contin is a slow release morphine and it really works. Later I switched to Fentanyl patches, which I am still on, a year later.
Yes. Fighting constipation will be your new sport. Sorry
I guess by now you really have realized that you came to the right place (a bit overwhelming) for help and information. Here goes my two cents
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j-o-h-n Tuesday 12/07/2021 3:36 PM EST - Day of Infamy
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Pain Management
Tramadol
17 years with metastatic prostate cancer - operation 2 and a dance with Lu
Metastatic prostate cancer of bone and bone marrow
