I have had bone mets for 7 years now and although they are pretty extensive to all areas of spine, skull, ribs, collar bone, pelvis & hips, have given little trouble until the past year. I have found it very hard to accept that I need to be on opiate pain meds now which are giving some relief. It is almost laughable that I need stimulants as well because the opiates make me so sleepy I need something to keep me awake. On Monday I am going to have a nerve block to the lower part of my spine and wonder if any of you have experience of nerve blocks. It seems they dont have that great a success rate with only around 30% getting relief that lasts for several months.
dawnhc
Hi Dawn,
So sorry that you are in pain.
I’ve got mets to my upper spine in two places and the neck ones are causing me to have terrible nerve pain in my shoulder and down my arm.
I’ve been on MST(slow release morphine)Gabapentin and Oramorph for weeks now and none of them are working.The pain is unbearable sometimes.My Dr has now prescribed Oxycontin tablets and liquid and lidocaine patches so I will see how I go with them.I’ve not heard of nerve blocks,so will look them up.
Take care,
Alli x
Hi Dawn
I know you’ve been in bad pain for a long time and really hope the nerve block may help. I’m also interested in hearing others’ experiences.
Over the past couple of weeks my own nerve pain in shoulder and arm has got worse and worse and I now find it difficult to walk more than 10 yards without getting bad pain which at times borders on the agony. My zomorph and amytrptyline have both been increased and I also take oramorph…all to little effect. On Friday I started a course of steroids…a daily dose of 8mg of dex after breakfast…they think this may reduce swelling. My pain is caused by neck nodes and chest nodes which are now quite large, swollen and trapping nerves.
I’m pretty miserable with it all. I’ve had two short breaks recently and want to plan other trips but don’t feel I can until pain under control.
Hope your pain improves Dawn and Ali…this is one heap of cr*p (oh don’t get me on constipation and the joys of French suppositories.) At least the steroids counter the sleepiness of the other drugs.
Jane
Hi Jane and others
Sorry to hear you are in so much pain. Lisa had awful pain in neck, shoulders and back of head and took all the drugs that all of you say you are on including the steroids which helped a bit but she still had awful pain at times where she couldn’t even think straight. She did get some relief however on a TENs machine when she was in hospital. It made such a difference when she had it on. She had to have it moved around but any relief was better than the pain she was experiencing.
Sue x
Good Luck Dawn, I’ll be thinking of you on Monday, I hope you get some real relief, lasting relief, from the pain…Take Care…x
Hi Jane and Alli…a couple of friends benefitted from having a short hospice stay…just a few days…where the staff were able to try some different meds and when doses had been adjusted they did get some considerable pain relief…apologies if you’ve both already tried this…just thought I’d mention it as hospice staff seem to have so much more knowledge of the various drugs. A friend with very severe bone mets pain has had some relief from ketamine…I know it’s a really strong drug but she’s had some relief and is taking holidays and getting out and about again.
Here’s a tiny bit of info…there’s lots on the web about it’s palliative use. But again apologies if you’ve already looked at or tried this drug.
Belinda…x
An old drug with a new role
Ketamine has been around for about 30 years and used by anaesthetists as a dissociative general anaesthetic. It activates the limbic system and depresses the cerebral cortex, producing profound analgesia, slight respiratory depression, cardiovascular stimulation and amnesia. The protective reflexes are maintained. Ketamine is an N-methyl-D-aspartate (NMDA) receptor antagonist.
It is because of the unique properties of ketamine that this drug has become of interest to palliative care physicians who are always on the lookout for drugs to assist patients with severe and sometimes difficult to control pain. It has particularly been looked at in the so called ‘wind up’ phenomena where there is a progressive increase in dorsal horn neuronal response to rapidly repeated, identical noxious stimuli. In clinical terms it may mean that simple touch input is converted into a painful sensation called allodynia. It can also mean that a painful response to any given painful stimuli is magnified (hyperalgesia) and prolonged. The ‘wind up’ appears to be mediated by the NMDA receptors and can be reduced by ketamine. It is very resistant to opioids and neuropathic agents.
Hi Belinda,
Thanks for the info.I see a Dr who specialises in pain at my local Marie Curie hospice.I’m seeing a physio there on Tuesday to try out a TENs machine.I started taking the Oxycontin yesterday but I’m still not getting any relief yet.The lidocaine patches aren’t working either.I did have a brief moment,when I went to bed last night,when I was pain free but woke up at 6am in terrible pain again.
I agree with you Jane-it does make me feel miserable a lot of the time and I don’t know about you but I just need to be left alone because I feel so agitated all the time.
Let us know how you get on on Monday Dawn.
Alli x
Yes thanks Belinda.
I’m on the phone to my hospice nurse in the morning to try to see a pain consultant. I have no faith in TENS machines I’m afraid though…but might get desperate enough to try.
It is so frightening and restricting being in pain…I was hoping to have some reasonably well time off chemo. Cancer wise my spread is so much less than others but the pain is grim. The fact that this is not being easily sorted does not increase my confidence in the promises hospices make about managing pain at end stage. I can’t help felling quite angry abut this though I know they all think they are doing their best.
Dawn…I think you are going to be our pioneer on the nerve block…good luck.
Jane
Hi all
I have been very interested to read these posts and also upset by them.
It worries me that we all are suffering so much pain, and like Jane says, if the pain is so bad now what the hell will it be like further down the line. I presume one is just knocked out on morphine.
Since bone mets were found in January this year, I have had a lot of pain, particularly in my spine. Radiotherapy to my upper spine has eased some of this pain, but the pain in my lower spine cannot be reduced at all. Not by using my current medicine of Ibuprofen, Paracetomol and Oramorph. Finally, this week, in order to get an urgent MRI scan I was admitted to hospital for a couple of days. It turned out not to be the suspected spinal cord compression but just an increase in cancer in base of spine. After some persuasion I am going to be given radiotherapy to the area.
But all this scares me - the pain is preventing me lead any kind of normal life, cannot sleep properly and the so called Macmillan pain experts can’t seem to help.
What can be done…? I have recently given up the Ibandronate trial as the waiting for an hour each morning was not working for me. I have since had one lot of pamidronate and do hope this may help pain relief.
Anyone who manages to be pain -free with bony (or otherwise) mets, please post and say how…
Thanks
Ena
Hi Ena,
and thanks to all of you for your comments. As I said in my first post I have had extensive bone mets since 2002 and have stayed relatively pain free over that period. I had rads to upper spine and one hip some time ago which helped but recent rads to lower spine and other hip did not help. Ena I found that I started treatment for the mets with pamidronate and it wasnt until i had about 3 lots that I noticed relief of the initial pain but I have stayed with that particular bisphosphonate as it has kept the mets stable for so long. I did spend 5 days last week in the Marsden - they have a palliative care ward. About 2 months ago I agreed to join a trial comparing why some patients reacted well to morphine whilst others did better on oxycodone. I drew the morphine arm and wasnt happy about that because i had 3 months of that last year and felt so ill on it. But I persevered for a month then I couldnt stand it any more so the trial nurse agreed to switch me to oxycodone. I did feel a lot better in myself on that but had to have the initial dose increased quite a lot. I also take amitriptyline at night. Not sure if this helps with the pain but at long last am free from the spasms I used get which were quite bad. They suspect some of my pain is being caused by the bone mets and some by the pressure being put on a group of nerves along with a prolapsed disc. I am hoping the nerve block tomorrow will work and will certainly be reporting back. I really sympathise with all of you suffering pain from bone mets - it is tough! I think that if we agreed to the amount medics would like us to take we probably would be reasonably pain free but I prefer to live some of my life out of my bed!
I don’t think I can stand it anymore.I was in and out of bed all night pacing the floor in pain.I finally broke down yesterday for the first time since being diagnosed 16 months ago.
Dawn - Morphine hasn’t worked for me either and it made me feel sick for the first two weeks of being on it.Now on 15mg Oxycontin tabs twice a day,Oxynorm liquid when I need it and 3 Gabapentin a day.Also take paracetamol in between.I’m sitting here with 3 Lidocaine patches dotted about my arm and shoulder and none of it is working!!
I had radiotherapy to C7 and T11 vert but Onc says it obviously hasn’t worked-great hey!!
I’ll let you know how it goes with the TENs machine tomorrow…please please work!! Having a bone scan on Thursday and a CT on Friday to.
Alli x
Oh Alli…I’m sorry to read this…hope things get better…something works soon…Love Belinda…x
Hi Alli,
How are you finding the oxycontin is working for you after the morphine. I was surprised at the difference I felt between the 2. Up till today I have been on 80mg 2x morning and evening. Then I can take oxynorm liquid for breakthru pain. Some days I feel I dont need so much and other days I cant get enough of it!! Today after the nerve block they have handed back control to the patient :). He has reduced it to 40mg a.m. and p.m. with as much top up as I want. Then if the nerveblock seems to have worked I can reduce the night one to 20mg and they will adjust the a.m. one depending on how I feel.
The nerve block procedure was tough. They inject local anaesthetic into the area around the vertebrae they are aiming at. In my case it was L2/3 but he was unable to find a gap between the 2 discs to insert the needle with the steroids. This was the senior registrar, but in the end the consultant scrubbed up and took over. He couldn’t find a gap either so they went for one in the thoracic spine and eventually after much prodding and poking found a small gap. He said that I appear to have no gaps between most of the vertebrae now - which would account for my shrinkage! I won’t know if it has worked for a few days yet so have fingers and everthing else crossed.
Would I do it again? Not sure.
Dawn
xx
Dawn…that sounds horribly tough and I do hope it works well for you so you don’t have to consider it again.
Alli…pacing the floor all night…I so hope you can get some relief.
My own pain is less intense today though still restrictive…I managed little walk to local shops without arriving back in agony. I’m hoping the steroids may be working. I’m seeing a pain consultant from local hospice on Wednesday…fingers crossed.
Jane
Hi Dawn and Jane,
I am in my local Marie Curie hospice at the moment while they try to manage pain.Can’t explain now as I have to go.
Love Alli x
Hi Alli…I hope your hospice stay is helping and you can get some good pain relief meds that really work well for you. x.x.x
Hi Alli,
Hope they are sorting out the pain control meds for you. If only one size fit all worked life would be so much easier for us! I spent 5 days in the Marsdens palliative care ward a couple of weeks ago to try and sort something out, but then arranging the nerveblock negated that! It is now 6 days since the nerveblock and it is looking like it hasnt worked for me :(.
dawn
xx
I’m so very sorry to hear this Dawn.
x
Well the collective wisdom of pain experts isn’t doing much for us is it? I’m so sorry Dawn that your nerve block seems not to have worked. Alli: really hope the hospice can sort something out for you.
Me: well I’m OK if I stay indoors, sitting down…but whenever I go out and try to walk a few yards my pain starts up again…always bad enough to make me feel grumpy, weepy and irritable, and at times just nearing the threshold of what I can tolerate. So I’ll be on the phone again to hospice nurse in the morning. Last week they told me there awas an alternative to amytryptiline I could try. I’m currently on 75mg amy, 20 mg morphine morning and night, top up oramorph, paracetomol, and 8 mg of dex…a lot of tablets…maybe if I just did cold turkey the pain would go??
Jane
Jane I know we all react quite differently to these drugs. Have you tried oxycodone? I feel totally different on this to how I felt on morphine. It made me feel ill - don’t really know how else to describe it. On Oxycodone I feel more myself, the real me. I am on 40mg a.m. and p.m. of oxycontin (slow release oxycodone) plus 25mg of amitriptyline.I also have some fentanyl lozenges & oxynorm I can top up with but so far only needing it now and then. It has been suggested I double the ami but am loathe to as I sleep 10hrs at night on it! I have reached the time in which they say you notice the difference with the nerve block if it is going to work for you. I hardly dare hold my breath but today is the best I have had in a long time. Am I just a bit slower at reacting I wonder? (hope even).
I find the pain is there usually regardless of how much or how little I do, but getting about outside finishes me off after a few minutes so I have acquired a mobility scooter so that I can get about when I feel like it. Never thought just window shopping could be such a treat 
Dawn