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Understanding pain management for mCRPC

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User
Posted 08 May 2026 at 12:12

Hoping to gather views and provide information in one place for others if they are unfortunate to reach this stage.  OH is now metastatic castrate resistant prostate cancer last PSA was 70.  He has had spinal cord compression treated with radiotherapy to the thoracic spine around T4 and an insufficiency fracture on L5.  He has no more treatment options.  We don’t go back to oncology clinic until end of June which seems ages away and pain management has been passed back to his GP.  We only have telephone conversations with the GP, which seems a bit limited to me as they cannot see how poorly he is but maybe that is the way things are.  GP has been very responsive and available by telephone calls but for once I am feeling a bit confused over the pain management plan and how best to support.  I don’t really understand where the pain is coming from, bone mets, spinal fracture or disease progression. 


Medication currently is Decapeptyl injection every 6 months although I wonder if this is still needed considering where we are.  Paracetamol 500mg x 2 four times a day, Codeine 30mg x 2 three times a day with slow-release Morphine 2 x 10mg at night, Oramorph liquid morphine 10mg/5ml for breakthrough pain and we have just been prescribed Oxeltra – Oxycodone 5mg slow release because the pain has increased to quite unbearable levels at times.  I had asked GP if we needed to be referred to palliative teams for pain control, but she mentioned only when she is unable to control the pain. It just seems that we aren’t where we need to be with reduction in pain, OH has no quality of life and can barely eat.  The side effects from medication also need to be handled as the gut mobility stops and laxatives are needed daily.  So feeling a bit lost and wondering if there is anything else I need to consider to help this situation.


Take care all and thanks for the wonderful support form this online community

User
Posted 25 Aug 2026 at 21:39
Another update and we are still in a tough place. Husband went into Myton Hospice today for pain management support. I am trying to outline what to expect if you unfortunately get to this stage. I am a little humbled by the support we are getting from Myton for his wellbeing. Initial doctor assessment covered much more than pain, and looked at forward intervention planning, yes or no to CPR (we went no), going to hospital or staying in hospice if something happened that maybe wouldn’t improve wellbeing. A hard day. I need to take him for an MRI scan on Thursday from the hospice and back again to see where his pain is coming from, I will be asking MRI team to share details with Myton hospice doctors as he is an inpatient. Hardest part was leaving him there today – he said this must be the start of our goodbye which hurt me to the heart somewhat. Sharing this to help others prepare. I will be getting him home, but we have scratched the surface of things we need to talk about. MRI will show if there is anything related to disease progression in the pain area, but the problem is in an area of previous radiotherapy as part of radical RT. It is quite easy to go quiet on this site when it gets hard, but I am sharing in case it helps others getting close to this stage. The hospital bed at home really helped. Myton seemed to take over community palliative team because of the focus on pain and wellbeing. I think he is on too much opioid medication with not enough focus on nerve pain. Wish us luck!
User
Posted 02 Jun 2026 at 21:57

Thank you Chris and I found it quite confusing when having been so used to Oncology input and consultation for OH to be told there are no further treatment options, which I guess I maybe knew but hadn't acknowledged.  Then sent back to our GP for pain management which didn't go very well. GP never considered why the pain management wasn't working and it took the two A&E visits to get to the right people to dig deeply into what was happening. The spinal fractures and the spinal cord compression were such significant developments that hit us hard and very suddenly.  Before diagnosis OH in his late 70's would be very active and energetic, walk 2 hours every day with no problem.  No-one actually said he had a very aggressive prostate cancer but at G5+4 and initial PSA of 294 and not responding well to any of the first and second generation hormone treatments we should have realised.   I guess I suspected it.  Now it is hard to understand what clinical team is most important: spinal fracture, rheumatology or oncology.  We feel a little abandoned by oncology now, but are dealing with things day by day.  I wanted to share our journey because it may help others in the future.  Take care all.  

User
Posted 09 May 2026 at 12:12
Thank you ColwickChris and Wedidntwantthis. All very helpful suggestions which I will follow up. I have also been looking into how some people don’t respond well for pain reduction to Morphine, especially for neuropathic pain which may be what OH has from his insufficiency fracture. I will research more so we are well prepared for our next conversations with the GP and others and keep this post up to date as we progress because I am sure it will help others. We are only 3.5 years into PC and I am surprised to be at this dreadful stage so soon.

Thanks
User
Posted 11 May 2026 at 09:08
It has progressed a bit, yesterday we went to A&E because of the pain and the doctor did the spinal cord compression tests and we had another MRI (had to wait 7 hours for that). OH has a new spinal cord compression T11 and T12 so he is still in A&E being moved to ward with a multidiscipline team to decide if radiotherapy or something else is needed. He is flat on his back and the spinal registrar was a bit horrified he had been made to wait hours on a seat in A&E. My lesson learnt is if the pain is not being controlled do consider checking out for spinal cord compression. This is the second time he has had this in different places in his spine. One thing I missed was that I thought he has suddenly lost height a week or two ago, now I know why. Thanks all for your comments, it is so helpful not feeling on your own in these situations.
User
Posted 09 Jul 2026 at 22:11
July update. Very helpful 3-month meeting with Oncology consultant where we discussed all our queries in detail. Blood tests show that OH’s breathlessness is not caused by anaemia, it could be cancer fatigue, opioids and/or an effect of the spinal brace or a bit of all. When the osteoporotic compression fractures in T11 and T12 heal, he suggests not to rush into reducing Oxycodone, Amitriptyline or Dexamethasone. Focus now will be on managing quality of life, pain management and maintaining mobility, which is much reduced. PSA has gone from 70 to 157 showing the cancer is still progressing aggressively with a less than 3-month doubling time, which is not good. ALP has gone up to 142. We are back on regular use of Oxynorm for breakthrough pain. We have been referred to our local Macmillan palliative care team who have visited us at home so we are in the system now, which feels good and gives me more confidence that we can get help when needed. The oncologist suggested taking calcium supplements as well as the Cholecalciferol Vitamin D and taking Omeprazole to help with oesophageal irritation, which could be due to long-term steroid use. We also had another discussion about chemotherapy but OH still declines, he wants quality of life not quantity of life at his age (80). Feeling a bit flat now but none of this comes as a surprise, it has taken us just four years to get to this point.

Consultation at the spinal fracture clinic today where an x-ray without the spinal brace on was taken. This shows fractures are healing as expected so the spinal brace can come off. He did mention OH will continue to get more fractures. We asked about weaning off the spinal brace and he said no need. I don’t agree with this because OH is in so much pain at times recently and it can’t be just muscle spasm, which was suggested. We will take it much slower getting to a position where the spinal brace comes off and we focus on muscle strengthening. One step forward and two steps back it feels like. I will take OH to A&E if the pain is too much. Last time at A&E we were told the increased pain needed to be within the last 2 weeks to qualify for an MRI so I will take that on board. Take care everyone.
User
Posted 11 Jul 2026 at 06:54

Hi Schubert


So sorry to hear what you are going through. 


My husband has extensive bony mets and had an insufficency fracture of hip last year ( only 6 months into treatment). He had targeted radiotherapy too. His PSA was112 on 2nd June and he had a displaced fracture in same place which needed surgery. He takes paracetamol, 4 times a day, celecoxib twice a day and has buprenorphine patches weekly, currently 20ug, and top up oramorph.


We now have a hospice community nurse helping in pain management.


I think you need to push your GP to give you palliative care as she is ob iously not controlling his pain and someone needs to come and see him.


I completely understand how you will be feeling...it is awful seeing them suffer such horrible pain.


He also should be on meal supplement shakes or drinks that the GP can prescribe if he is not eating much.


Sending you a massive virtual hug!

User
Posted 26 Aug 2026 at 08:41

Thanks for taking the time to share this. It sounds like the hospice is providing some much needed comfort to you both. I hope they can identify and address the pain.


It amazes me that hospices have to rely on charity for much of their funding when they provide such a vital service. 


Wishing you both all the very best.

User
Posted 06 Sep 2026 at 20:50
Again, it is hard to share updates, but I know they are important to others. MRI last week was hard for my husband and because he moved at one point they had to repeat. His mobility was poor at the hospital, and he was quite exhausted after the journey there and back and having to drive past our house twice. As the MRI was done as an outpatient from the spinal and trauma department it was not prioritised and took a week for the hospice doctor to see the report. Bad news and the hospice doctor was so honest and genuine as he gave us the bad news. T4 bone met which had already had radiotherapy for spinal cord compression has now reoccurred and the whole T4 vertebrae is now all cancer cells with spinal cord compression and no opportunity of radiotherapy to resolve, just increase dose of Dexamethasone to 16mg which they started immediately. But there are new bone metastases on C2 and C3. This explains the visual distortions and hallucinations he has been having since he went into the hospice. He went from colour vision to black and white then back to colour vision and every day he is seeing things that are not there but is not worried about them. When I brought this to the doctors, they started him immediately on low doses of Clonazepam and Mirtazapine which introduced a background support for panic, reduced nervous impulses and helps him to sleep. Doctors there agree with me we are at weekly deterioration. The spinal trauma multidiscipline team meeting is next Friday so another wait to see if they have any suggestions. We are beginning to think he may not come home. Today he degenerated rapidly sitting outside his room in the sunshine and lost his ability to walk, followed by deep sleep for 30 minutes. I informed the nurses and they will monitor. The hospice is already supporting us both with aromatherapy massage, counselling and it feels like our whole family is being supported so well. It is so humbling. After Friday we will know more from the spinal and trauma multidiscipline team meeting. I know he may very quickly become bedridden as his spine is so unstable. I am quite scared at being able to support his needs at home if I can get him home. All so hard. Only advice to others is to do everything you can to stop this disease getting to your bones. I am being serious here.
Good luck to you all
User
Posted 08 May 2026 at 22:10

Schubert, sorry I don't have any answers or advice to offer, but wanted to thank you for you honest post. The latter stages of this horrible disease are very often the elephant in the room. The forum used to have a number of women who had experience and knowledge if your position, sadly they no longer post. 


Have you spoken to the nurses on this site, unfortunately they don't work weekends.


Thanks Chris 

User
Posted 09 May 2026 at 08:05

I’m sorry to read this. Have you considered contacting your local hospice for further advice on pain management and quality of life. Your GP states palliative not available until she can’t control the pain but I if I’ve understood correctly the pain is uncontrolled. I hope you can get some support very soon.  

User
Posted 09 May 2026 at 13:05

Hello.


I'm so sorry to hear that your husband is suffering. Years ago my dad was in a similar position. In the end,  I had him assessed by social services, district nurses and MacMillan nurses. They all did their best to make him as comfortable as possible. I was most impressed by Macmillan nurses they were wonderful.


My heart goes out to you both. I hope you get the help that you deserve.

Edited by member 09 May 2026 at 22:07  | Reason: Additional text

User
Posted 10 May 2026 at 06:53
Insist on a referral to the pain management team, district nurses and Macmillan.

The GP doesn't make any sense, every medical professional should know letting pain get out of control is a mistake. So waiting is not an option in your case IMHO.
User
Posted 10 May 2026 at 12:04
Just wanted to add to the supportive thoughts and hopes for you and your husband. I don't have good suggestions but wanted to send strength especially for getting the help your husband needs. but maybe wondering If medical marijuana an option? Hope you get much needed support from the NHS immediately.
User
Posted 12 May 2026 at 09:47
Make sure he gets referrals for pain management and Macmillan while he is still in hospital. It's a little easier to access resources whilst still in hospital.
User
Posted 12 May 2026 at 10:13

Just to repeat what was already mentioned - make contact with a hospice. They are not just for when passing away is imminent, but they are the experts at pain management and giving you a better quality of life. Establishing the connection before it's needed is a good idea too, and it doesn't mean becoming an in-patient now or at any stage.


Yes, no one should be sitting in A&E for 7 hours with spinal cord compression. Obviously, you couldn't know it was that, but if it happens again, definitely something to let them know on admission.

User
Posted 12 May 2026 at 21:22

Thanks for keeping us updated. Hoping you get some rest and that your husband feels better now. My heart goes out to you both.

User
Posted 19 May 2026 at 22:47
Update time. Hoping to get OH back from hospital tomorrow. NHS staff provided amazing care and attention but there are things I want to say about where we are. Most important is that I think bisphosphonate (Alendronic Acid or other) should be mandatory with many of the advanced mCRPC treatments. My OH has twice rejected taking Alendronic Acid and he is in so much pain and reduced QoL now with an osteoporosis related compression fracture to T11 and T12 that is so much harder to live with than living with the prostate cancer, I even forgot he had cancer for a week. I come from a background of Cellular Pathology from the 1976 so outdated but shows how I dig deep into the situation. Seems like all prostate cancer hormone treatment, especially Abiraterone and Dexamethasone with Ra-233 treatment increase risk of spinal fracture. OH has had all of this and has always rejected Alendronic Acid from reading the side effects. I think the word ‘acid’ may be to blame. Life now has changed. I fit a spinal brace in the morning so he can get up. It is uncomfortable but without it he is bedridden. He needs to be in a single bed so I can push and pull the brace for fitting and had to get signed of as trained by hospital physiotherapists. I think we will go to taking it off for an hour or so in the afternoon then putting back on again. It is hard to fit but I am strong. But overnight he cannot get up for a pee. So either overnight pads or use of a urinal bottle lying down. I think the spinal fracture will mend in 6 to 12 weeks (probably more like 12 as he is 80) but in a looser structural way than people without bone mets. We have a fracture clinic appointment soon. My OH used to be much taller than me but I seem to be taller than him now, I think that is permanent now. I worry Alendronic Acid is not strong enough to solve this problem but will go to the clinic next week with lots of questions. So I really want to emphasise if anyone is thinking of rejecting bisphosphonates to do lots of research. Personally, I would make it mandatory with what I know now. Pain medication is finally under control with Oxycodone and breakthrough pain with Oxycodone Norm. Will keep you updated and take care all.
User
Posted 20 May 2026 at 06:57
Keep up the good work he is lucky to have you.
User
Posted 20 May 2026 at 10:21

Thanks for sharing your experiences and i wish you and your husband all the best that can be🙏 


Phil 

User
Posted 20 May 2026 at 12:35

Hi, again.


Thank you for the update. I'm so pleased to hear that your OH's pain is now under control.  You are doing an incredible job caring for him. Your love for each other is palpable. 

User
Posted 02 Jun 2026 at 14:22
Update time. OH was discharged from hospital on 22 May after 12 days in the spinal trauma ward. Before signoff he had to have clearance from Oncology, Spinal Fracture and Rheumatology clinics. Rheumatology insisted he had an infusion of Zoledronic Acid before discharge, which he had with no side effects.

After discharge we had a follow up consultation on 28 May in the spinal fracture clinic, also follow up is planned with Rheumatology in Mar 2027 and we have our regular Oncology clinic consultation this month on 30 June. His spine is stabilised with a TLSO spinal brace which I put on and take off, it is getting easier now that we have worked out how to manage it. Rheumatology have him on Colecalciferol tables which are 50,000 units once per week to front-load Vitamin D3 and support bone health until 19 June then he goes onto daily 800 units of Colecalciferol. At the follow up meeting in spinal fracture clinic he had another x-ray which showed his fractures are stable and haven’t degenerated more, which is what they wanted to see. The consultant mentioned his team spent a lot of time determining if the compression fractures in T11 and T12 were from osteoporosis or caused by cancer cells. If it was caused by cancer cells he would have had more radiotherapy but they were sure they were osteoporotic fractures hence the TLSO spinal brace and treatment for osteoporosis.

We go back to the spinal fracture in another 6 weeks and maybe, if the fractures are healing, he can take the spinal brace off. It has been tough and our day-to-day life has changed. OH has lost weight and is very tired but we are working through it all and feel the NHS staff were very thorough in looking after him.

Take care all and thanks for all your support.
User
Posted 02 Jun 2026 at 21:23

Schubert, thank you for your updates, feel free not to answer my questions and I will completely understand. If I read your posts right he was only diagnosed 3 years ago, I see he is in his early eighties. What was he like before the diagnosis.


My estranged father spent the last few years with terrible back pain,because we lived quite a distance apart I don't know at what stage he was diagnosed. 


My GP is trying and failing to get my blood pressure under control, your earlier post came to mind when I said I would sooner go with a heart attack that a long painful death. 


I have been to the hospital today with my wife and her Dad , he has been doing a brilliant job looking after his wife with severe dementia for about 5 years. About 3 weeks ago he started complaining of headaches, he his on almost as many meds as your husband but still in pain, cancer in the head behind the eye is expected to be confirmed. As an added bonus a cystoscopy last week revealed that the bladder cancer cured over 35 years ago has come back. The waiting for test results and a treatment plan just takes so long, his consultant this afternoon seemed almost embarrassed that he couldn't offer a plan. 


I hope they can find something to help your husband and thank your for telling us your story. 


Thinking of you thanks Chris.

User
Posted 10 Jul 2026 at 05:17

Hi.


I'm very sorry to see that your husband is still suffering and the disease is progressing at pace. For the past 4 years, you have both have been through so much.


I'm pleased that MacMillan palliative care team are aware of your situation.


You are remarkable couple, my thoughts are with you both.

User
Posted 25 Aug 2026 at 22:23

Originally Posted by: Online Community Member
Hardest part was leaving him there today – he said this must be the start of our goodbye which hurt me to the heart somewhat. Sharing this to help others prepare.


Truly heartbreaking. You are so brave and thoughtful to share. Huge hugs to you both. 

User
Posted 26 Aug 2026 at 08:25

Hi


Thankyou so much for sharing your personal experiences with us...it tells a lot of what happens to us all at the later end of our journeys,Unfortunately this comes far to early for some of us.


Sending you and your other half my thoughts


Phil 

User
Posted 26 Aug 2026 at 15:52
Thank you so much for sharing in these difficult times. I hope Myton can help with the ongoing pain. Sending you bug hugs.
User
Posted 27 Aug 2026 at 13:08

Schubert, I am so very sorry to read this and thank you for sharing at such a difficult time.


I am so glad that you now have the hospice looking after your OH as well as yourself, I hope.


I hope that they can get your OH as comfortable as possible.


Thinking of you both and hoping someone is helping you too.


Take care.x

User
Posted 06 Sep 2026 at 21:30

This is just so brave of you to keep us informed, thinking of you both at this difficult time.


Swañnie

User
Posted 06 Sep 2026 at 21:46

So brave of you to update and it is hugely appreciated.  For so many - me included - spread to the pelvis and spine is a fact of life and your posts are so useful.  Thank you again and good luck and stay strong and thinking of you both at this difficult time. 

User
Posted 06 Sep 2026 at 22:11
Thank you for your courage and strength in posting this update. Thinking of you both and sending hugs your way.
Show Most Thanked Posts
User
Posted 08 May 2026 at 22:10

Schubert, sorry I don't have any answers or advice to offer, but wanted to thank you for you honest post. The latter stages of this horrible disease are very often the elephant in the room. The forum used to have a number of women who had experience and knowledge if your position, sadly they no longer post. 


Have you spoken to the nurses on this site, unfortunately they don't work weekends.


Thanks Chris 

User
Posted 09 May 2026 at 08:05

I’m sorry to read this. Have you considered contacting your local hospice for further advice on pain management and quality of life. Your GP states palliative not available until she can’t control the pain but I if I’ve understood correctly the pain is uncontrolled. I hope you can get some support very soon.  

User
Posted 09 May 2026 at 12:12
Thank you ColwickChris and Wedidntwantthis. All very helpful suggestions which I will follow up. I have also been looking into how some people don’t respond well for pain reduction to Morphine, especially for neuropathic pain which may be what OH has from his insufficiency fracture. I will research more so we are well prepared for our next conversations with the GP and others and keep this post up to date as we progress because I am sure it will help others. We are only 3.5 years into PC and I am surprised to be at this dreadful stage so soon.

Thanks
User
Posted 09 May 2026 at 13:05

Hello.


I'm so sorry to hear that your husband is suffering. Years ago my dad was in a similar position. In the end,  I had him assessed by social services, district nurses and MacMillan nurses. They all did their best to make him as comfortable as possible. I was most impressed by Macmillan nurses they were wonderful.


My heart goes out to you both. I hope you get the help that you deserve.

Edited by member 09 May 2026 at 22:07  | Reason: Additional text

User
Posted 10 May 2026 at 06:53
Insist on a referral to the pain management team, district nurses and Macmillan.

The GP doesn't make any sense, every medical professional should know letting pain get out of control is a mistake. So waiting is not an option in your case IMHO.
User
Posted 10 May 2026 at 12:04
Just wanted to add to the supportive thoughts and hopes for you and your husband. I don't have good suggestions but wanted to send strength especially for getting the help your husband needs. but maybe wondering If medical marijuana an option? Hope you get much needed support from the NHS immediately.
User
Posted 11 May 2026 at 09:08
It has progressed a bit, yesterday we went to A&E because of the pain and the doctor did the spinal cord compression tests and we had another MRI (had to wait 7 hours for that). OH has a new spinal cord compression T11 and T12 so he is still in A&E being moved to ward with a multidiscipline team to decide if radiotherapy or something else is needed. He is flat on his back and the spinal registrar was a bit horrified he had been made to wait hours on a seat in A&E. My lesson learnt is if the pain is not being controlled do consider checking out for spinal cord compression. This is the second time he has had this in different places in his spine. One thing I missed was that I thought he has suddenly lost height a week or two ago, now I know why. Thanks all for your comments, it is so helpful not feeling on your own in these situations.
User
Posted 12 May 2026 at 09:47
Make sure he gets referrals for pain management and Macmillan while he is still in hospital. It's a little easier to access resources whilst still in hospital.
User
Posted 12 May 2026 at 10:13

Just to repeat what was already mentioned - make contact with a hospice. They are not just for when passing away is imminent, but they are the experts at pain management and giving you a better quality of life. Establishing the connection before it's needed is a good idea too, and it doesn't mean becoming an in-patient now or at any stage.


Yes, no one should be sitting in A&E for 7 hours with spinal cord compression. Obviously, you couldn't know it was that, but if it happens again, definitely something to let them know on admission.

User
Posted 12 May 2026 at 19:22
Thanks all and great suggestions. He is being fitted with an Aspen Vista spinal brace and I am getting lessons in fitting it on him. I have so many questions on the brace. He can't get up at night for a pee without the brace on so probably needs a urine bottle. Hoping this doesn't mean permanent catheter. How does he get a shower, I suspect he can't. Can he ever be without it and will the fracture heal, will it prevent any more compression fractures. I am at the hospital every day to support him, which they are allowing me to do. Pain medication has been simplified. He should not have been on both MST slow release morphine and Oxycodone. He is now on slow relesae Oxycodone twice a day, with Oxycodone norm solution for any breakthrough pain plus paracetamol. It's an exhausting time but I am planning on when I get him home and what adjustments we will need to make. In A&E I had told them about the mCRPC and previous spinal cord compression on admission and the A&E doctor also suspected another SCC then the MRI wait of 7 hours was after then. I was in A&E for 17 hours myself. I hope no-one else has to cope with this but hoping this information will help them if they do. I will continue to update how it all goes and what I learn that may help.
User
Posted 12 May 2026 at 21:22

Thanks for keeping us updated. Hoping you get some rest and that your husband feels better now. My heart goes out to you both.

User
Posted 19 May 2026 at 22:47
Update time. Hoping to get OH back from hospital tomorrow. NHS staff provided amazing care and attention but there are things I want to say about where we are. Most important is that I think bisphosphonate (Alendronic Acid or other) should be mandatory with many of the advanced mCRPC treatments. My OH has twice rejected taking Alendronic Acid and he is in so much pain and reduced QoL now with an osteoporosis related compression fracture to T11 and T12 that is so much harder to live with than living with the prostate cancer, I even forgot he had cancer for a week. I come from a background of Cellular Pathology from the 1976 so outdated but shows how I dig deep into the situation. Seems like all prostate cancer hormone treatment, especially Abiraterone and Dexamethasone with Ra-233 treatment increase risk of spinal fracture. OH has had all of this and has always rejected Alendronic Acid from reading the side effects. I think the word ‘acid’ may be to blame. Life now has changed. I fit a spinal brace in the morning so he can get up. It is uncomfortable but without it he is bedridden. He needs to be in a single bed so I can push and pull the brace for fitting and had to get signed of as trained by hospital physiotherapists. I think we will go to taking it off for an hour or so in the afternoon then putting back on again. It is hard to fit but I am strong. But overnight he cannot get up for a pee. So either overnight pads or use of a urinal bottle lying down. I think the spinal fracture will mend in 6 to 12 weeks (probably more like 12 as he is 80) but in a looser structural way than people without bone mets. We have a fracture clinic appointment soon. My OH used to be much taller than me but I seem to be taller than him now, I think that is permanent now. I worry Alendronic Acid is not strong enough to solve this problem but will go to the clinic next week with lots of questions. So I really want to emphasise if anyone is thinking of rejecting bisphosphonates to do lots of research. Personally, I would make it mandatory with what I know now. Pain medication is finally under control with Oxycodone and breakthrough pain with Oxycodone Norm. Will keep you updated and take care all.
User
Posted 20 May 2026 at 06:57
Keep up the good work he is lucky to have you.
User
Posted 20 May 2026 at 09:01

Thank you for the kind words francij1, it really helps to burst a bit of the stress bubble. 

User
Posted 20 May 2026 at 10:21

Thanks for sharing your experiences and i wish you and your husband all the best that can be🙏 


Phil 

User
Posted 20 May 2026 at 12:35

Hi, again.


Thank you for the update. I'm so pleased to hear that your OH's pain is now under control.  You are doing an incredible job caring for him. Your love for each other is palpable. 

User
Posted 02 Jun 2026 at 14:22
Update time. OH was discharged from hospital on 22 May after 12 days in the spinal trauma ward. Before signoff he had to have clearance from Oncology, Spinal Fracture and Rheumatology clinics. Rheumatology insisted he had an infusion of Zoledronic Acid before discharge, which he had with no side effects.

After discharge we had a follow up consultation on 28 May in the spinal fracture clinic, also follow up is planned with Rheumatology in Mar 2027 and we have our regular Oncology clinic consultation this month on 30 June. His spine is stabilised with a TLSO spinal brace which I put on and take off, it is getting easier now that we have worked out how to manage it. Rheumatology have him on Colecalciferol tables which are 50,000 units once per week to front-load Vitamin D3 and support bone health until 19 June then he goes onto daily 800 units of Colecalciferol. At the follow up meeting in spinal fracture clinic he had another x-ray which showed his fractures are stable and haven’t degenerated more, which is what they wanted to see. The consultant mentioned his team spent a lot of time determining if the compression fractures in T11 and T12 were from osteoporosis or caused by cancer cells. If it was caused by cancer cells he would have had more radiotherapy but they were sure they were osteoporotic fractures hence the TLSO spinal brace and treatment for osteoporosis.

We go back to the spinal fracture in another 6 weeks and maybe, if the fractures are healing, he can take the spinal brace off. It has been tough and our day-to-day life has changed. OH has lost weight and is very tired but we are working through it all and feel the NHS staff were very thorough in looking after him.

Take care all and thanks for all your support.
User
Posted 02 Jun 2026 at 21:23

Schubert, thank you for your updates, feel free not to answer my questions and I will completely understand. If I read your posts right he was only diagnosed 3 years ago, I see he is in his early eighties. What was he like before the diagnosis.


My estranged father spent the last few years with terrible back pain,because we lived quite a distance apart I don't know at what stage he was diagnosed. 


My GP is trying and failing to get my blood pressure under control, your earlier post came to mind when I said I would sooner go with a heart attack that a long painful death. 


I have been to the hospital today with my wife and her Dad , he has been doing a brilliant job looking after his wife with severe dementia for about 5 years. About 3 weeks ago he started complaining of headaches, he his on almost as many meds as your husband but still in pain, cancer in the head behind the eye is expected to be confirmed. As an added bonus a cystoscopy last week revealed that the bladder cancer cured over 35 years ago has come back. The waiting for test results and a treatment plan just takes so long, his consultant this afternoon seemed almost embarrassed that he couldn't offer a plan. 


I hope they can find something to help your husband and thank your for telling us your story. 


Thinking of you thanks Chris.

User
Posted 02 Jun 2026 at 21:57

Thank you Chris and I found it quite confusing when having been so used to Oncology input and consultation for OH to be told there are no further treatment options, which I guess I maybe knew but hadn't acknowledged.  Then sent back to our GP for pain management which didn't go very well. GP never considered why the pain management wasn't working and it took the two A&E visits to get to the right people to dig deeply into what was happening. The spinal fractures and the spinal cord compression were such significant developments that hit us hard and very suddenly.  Before diagnosis OH in his late 70's would be very active and energetic, walk 2 hours every day with no problem.  No-one actually said he had a very aggressive prostate cancer but at G5+4 and initial PSA of 294 and not responding well to any of the first and second generation hormone treatments we should have realised.   I guess I suspected it.  Now it is hard to understand what clinical team is most important: spinal fracture, rheumatology or oncology.  We feel a little abandoned by oncology now, but are dealing with things day by day.  I wanted to share our journey because it may help others in the future.  Take care all.  

User
Posted 09 Jul 2026 at 22:11
July update. Very helpful 3-month meeting with Oncology consultant where we discussed all our queries in detail. Blood tests show that OH’s breathlessness is not caused by anaemia, it could be cancer fatigue, opioids and/or an effect of the spinal brace or a bit of all. When the osteoporotic compression fractures in T11 and T12 heal, he suggests not to rush into reducing Oxycodone, Amitriptyline or Dexamethasone. Focus now will be on managing quality of life, pain management and maintaining mobility, which is much reduced. PSA has gone from 70 to 157 showing the cancer is still progressing aggressively with a less than 3-month doubling time, which is not good. ALP has gone up to 142. We are back on regular use of Oxynorm for breakthrough pain. We have been referred to our local Macmillan palliative care team who have visited us at home so we are in the system now, which feels good and gives me more confidence that we can get help when needed. The oncologist suggested taking calcium supplements as well as the Cholecalciferol Vitamin D and taking Omeprazole to help with oesophageal irritation, which could be due to long-term steroid use. We also had another discussion about chemotherapy but OH still declines, he wants quality of life not quantity of life at his age (80). Feeling a bit flat now but none of this comes as a surprise, it has taken us just four years to get to this point.

Consultation at the spinal fracture clinic today where an x-ray without the spinal brace on was taken. This shows fractures are healing as expected so the spinal brace can come off. He did mention OH will continue to get more fractures. We asked about weaning off the spinal brace and he said no need. I don’t agree with this because OH is in so much pain at times recently and it can’t be just muscle spasm, which was suggested. We will take it much slower getting to a position where the spinal brace comes off and we focus on muscle strengthening. One step forward and two steps back it feels like. I will take OH to A&E if the pain is too much. Last time at A&E we were told the increased pain needed to be within the last 2 weeks to qualify for an MRI so I will take that on board. Take care everyone.
User
Posted 10 Jul 2026 at 05:17

Hi.


I'm very sorry to see that your husband is still suffering and the disease is progressing at pace. For the past 4 years, you have both have been through so much.


I'm pleased that MacMillan palliative care team are aware of your situation.


You are remarkable couple, my thoughts are with you both.

User
Posted 11 Jul 2026 at 06:54

Hi Schubert


So sorry to hear what you are going through. 


My husband has extensive bony mets and had an insufficency fracture of hip last year ( only 6 months into treatment). He had targeted radiotherapy too. His PSA was112 on 2nd June and he had a displaced fracture in same place which needed surgery. He takes paracetamol, 4 times a day, celecoxib twice a day and has buprenorphine patches weekly, currently 20ug, and top up oramorph.


We now have a hospice community nurse helping in pain management.


I think you need to push your GP to give you palliative care as she is ob iously not controlling his pain and someone needs to come and see him.


I completely understand how you will be feeling...it is awful seeing them suffer such horrible pain.


He also should be on meal supplement shakes or drinks that the GP can prescribe if he is not eating much.


Sending you a massive virtual hug!

User
Posted 25 Aug 2026 at 21:39
Another update and we are still in a tough place. Husband went into Myton Hospice today for pain management support. I am trying to outline what to expect if you unfortunately get to this stage. I am a little humbled by the support we are getting from Myton for his wellbeing. Initial doctor assessment covered much more than pain, and looked at forward intervention planning, yes or no to CPR (we went no), going to hospital or staying in hospice if something happened that maybe wouldn’t improve wellbeing. A hard day. I need to take him for an MRI scan on Thursday from the hospice and back again to see where his pain is coming from, I will be asking MRI team to share details with Myton hospice doctors as he is an inpatient. Hardest part was leaving him there today – he said this must be the start of our goodbye which hurt me to the heart somewhat. Sharing this to help others prepare. I will be getting him home, but we have scratched the surface of things we need to talk about. MRI will show if there is anything related to disease progression in the pain area, but the problem is in an area of previous radiotherapy as part of radical RT. It is quite easy to go quiet on this site when it gets hard, but I am sharing in case it helps others getting close to this stage. The hospital bed at home really helped. Myton seemed to take over community palliative team because of the focus on pain and wellbeing. I think he is on too much opioid medication with not enough focus on nerve pain. Wish us luck!
User
Posted 25 Aug 2026 at 22:23

Originally Posted by: Online Community Member
Hardest part was leaving him there today – he said this must be the start of our goodbye which hurt me to the heart somewhat. Sharing this to help others prepare.


Truly heartbreaking. You are so brave and thoughtful to share. Huge hugs to you both. 

User
Posted 26 Aug 2026 at 08:25

Hi


Thankyou so much for sharing your personal experiences with us...it tells a lot of what happens to us all at the later end of our journeys,Unfortunately this comes far to early for some of us.


Sending you and your other half my thoughts


Phil 

User
Posted 26 Aug 2026 at 08:41

Thanks for taking the time to share this. It sounds like the hospice is providing some much needed comfort to you both. I hope they can identify and address the pain.


It amazes me that hospices have to rely on charity for much of their funding when they provide such a vital service. 


Wishing you both all the very best.

User
Posted 26 Aug 2026 at 15:52
Thank you so much for sharing in these difficult times. I hope Myton can help with the ongoing pain. Sending you bug hugs.
User
Posted 27 Aug 2026 at 13:08

Schubert, I am so very sorry to read this and thank you for sharing at such a difficult time.


I am so glad that you now have the hospice looking after your OH as well as yourself, I hope.


I hope that they can get your OH as comfortable as possible.


Thinking of you both and hoping someone is helping you too.


Take care.x

User
Posted 06 Sep 2026 at 20:50
Again, it is hard to share updates, but I know they are important to others. MRI last week was hard for my husband and because he moved at one point they had to repeat. His mobility was poor at the hospital, and he was quite exhausted after the journey there and back and having to drive past our house twice. As the MRI was done as an outpatient from the spinal and trauma department it was not prioritised and took a week for the hospice doctor to see the report. Bad news and the hospice doctor was so honest and genuine as he gave us the bad news. T4 bone met which had already had radiotherapy for spinal cord compression has now reoccurred and the whole T4 vertebrae is now all cancer cells with spinal cord compression and no opportunity of radiotherapy to resolve, just increase dose of Dexamethasone to 16mg which they started immediately. But there are new bone metastases on C2 and C3. This explains the visual distortions and hallucinations he has been having since he went into the hospice. He went from colour vision to black and white then back to colour vision and every day he is seeing things that are not there but is not worried about them. When I brought this to the doctors, they started him immediately on low doses of Clonazepam and Mirtazapine which introduced a background support for panic, reduced nervous impulses and helps him to sleep. Doctors there agree with me we are at weekly deterioration. The spinal trauma multidiscipline team meeting is next Friday so another wait to see if they have any suggestions. We are beginning to think he may not come home. Today he degenerated rapidly sitting outside his room in the sunshine and lost his ability to walk, followed by deep sleep for 30 minutes. I informed the nurses and they will monitor. The hospice is already supporting us both with aromatherapy massage, counselling and it feels like our whole family is being supported so well. It is so humbling. After Friday we will know more from the spinal and trauma multidiscipline team meeting. I know he may very quickly become bedridden as his spine is so unstable. I am quite scared at being able to support his needs at home if I can get him home. All so hard. Only advice to others is to do everything you can to stop this disease getting to your bones. I am being serious here.
Good luck to you all
User
Posted 06 Sep 2026 at 21:30

This is just so brave of you to keep us informed, thinking of you both at this difficult time.


Swañnie

User
Posted 06 Sep 2026 at 21:46

So brave of you to update and it is hugely appreciated.  For so many - me included - spread to the pelvis and spine is a fact of life and your posts are so useful.  Thank you again and good luck and stay strong and thinking of you both at this difficult time. 

User
Posted 06 Sep 2026 at 22:11
Thank you for your courage and strength in posting this update. Thinking of you both and sending hugs your way.
 
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