Hi everyone I have my first appointment coming up with oncologist on wednesday since being diagnosed with spinal mets but I am screaming an agony with the pain.
My GP has now put be on 2 x 300 zomorph per day (I presume this is over 24 hours and have been taking one at 12am and one at 12pm
3 x metroclopramide tabs per days - which arent working as I cant even keep water down.
3 x 50mg diclofenca per day
also told to top up for breakthrough pain with Oramorph if needed, but as soon as I take it Im sick
2 co-danthramer at night fo constipation.
I am in so much pain I can just about get to the loo and back, havent eaten anything for 2 days as even looking at food makes me vomit.
I am on my own for most of the time as my son works from 8.30am until 12.30am most days.
Im hoping when I see the oncologst next week she will be able to help with the pain, Im not a mardybum but this is totally unbearable, also my GP has referred me to MacMillan Nurse last week so hoping they get in touch next week too.
I also have pins and needles and loss of feeling in my thighs and pain and spasms in my buttocks and vagina too, did anyone have this and does it improve when mdications are started.
Im sorry to blubber but I really cant stand this pain much longer
That sounds absolutely awful. Have you had any scans such as MRI etc. It sounds to me like you need a hell of a lot more doing than just being dished out with pain meds like sweeties! I would chase up the macmillan contact and not wait for them to contact you - you need help and you need it urgently. Does your GP know of the symptoms you mention here? I wonder if you shouldnt be contacting your oncologist first thing tomorrow to tell them what is happening.
I really think this sounds so dreadful.
You must try and make contact with your medics asap. Don’t wait any longer.
Insist they help you or at least explain why these drugs are not touching the pain.
I have no solutions at all but really hope tonight is bearable for you. I hope you can sleep and reach tomorrow morning quicker.
Then you can phone your GP or MacMillan nurse first thing.
Hi,
so sorry to hear you are in such a tough place, poor you. I did know a lady who was in a similar situation with her spine and they restarted chemo and bone strentheners really quickly and it improved fast and she was able to walk again after the first one had got into her and it kept improving on the next ones. Her surgeon said straight away we can reduce this pain quickly. She was a private patient and had avastin too although they did not think that was the thing working so quickly. The nurse thought it was the bone strentheners but could have been the xeloda. Big hugs that they can do something for you too quicklyas possible
Lily x
Ann, I am so sorry to hear about the awful pain you are in. Any loss of feeling or pins and needle anywhere should be looked at very quickly. I do hope you contact someone in the morning.
I have spine mets and rib mets and was in a lot of pain until a month ago but had radiotherapy to the spine and now am only taking co-codamal.
Personally I would bypass the GP and get on to the oncologist or nurse straight away.
If you are awake and still in such pain phone NHS direct, they will help you.
Oh Ann, this is dreadful. I would have thought this qualified as an emergency and you would be within your rights to call an ambulance and get yourself admitted for some urgent pain relief. Good luck I hope this si sorted very quickly for you.
Ann, my heart goes out to you. Please contact the hospital direct this morning either your oncologist, your BCN, anyone that will answer the phone. You need help and quickly. To answer your question about the meds, if your GP has not made it absolutely clear how and when to take each meds contact the pharmacy they will know, if fact they often know more than GPs about medicines. The zomorph is taken 12 hourly, but maybe 12am and 12pm is not the best times. Perhaps 8am or 9am would be better, then at night if taken at 8 or 9pm then if may give you enough pain relief to have you sleepy before midnight. Pain in always worse at night when everyone else is asleep and all is quiet.
Please please please contact someone this morning do not wait for them to contact you
Hi Ann,
You really need to make contact with the palliative care team and/or your Macmillan nurse at your local hospice as they will help with the pain relief side of things.
Vicky has been on 300 microgrm Fentanyl patches, 160mg MST, 10mg Methadone & 350mg Sevredol as breakthrough for some time and they are now taking her in to transfer completely over to methadone. She also has spinal mets and receives Zometa every 3-4 weeks which helps.
If you can talk to the right people then they will be able to help get your pain under proper control.
Best wishes,
Stuart
Definitely get seen ASAP and tell them of the pins and needles and loss of feeling.These ARE symptoms of spinal cord compression (where the diseased vertebrae is pushing on your spinal cord a bit like a slipped disc) which can be treated with rads.
Good luck and don’t take no for an answer!!!
Hi Ann, Just to reiterate what everyone else has said. This sounds dreadful and you need to ring the Onc team as soon as possible. I agree with finty that this sounds like an emergency to me and you should at the very least be seen immediately and possibly hospitalised until they sort the pain out. Please don’t delay any longer and do let us know how you get on.
Take care of yourself, sending lots of love and hugs,
As already has been said, you do have some of the symptoms of spinal cord compression, which I what I had in April and if so, it is an emergency. You will need steriods immediately and probably an op within a week (sorry I have never heard of radiotherapy as a treatment for spinal cord compression - it certainly wasn’t an option for me). I know this sounds awfully dramatic, but once you are through this rough patch you will feel a whole lot better. I have no pain at all in my back now (not that I had much before the op anyway), but I do get backache quite quickly when standing up for any period of time.
It sounds like we are all saying much the same. I found it really difficult posting first last night not to make it sound too urgent so am relieved to see the other replies. Having spine mets myself I am often asked in clinic if I have any of the symptoms you describe Ann and it is important to speak to your hospital team - not the gp.
Linda,radiotherapy is used to treat the majority of metastatic spinal cord compressions but surgery may be required in a small number of cases depending on location/type of tumour and spinal stability.Sorry you were in the second group.
Thanks so much for your replies which yet again give me some hope that maybe I can get pain reduced once treatment starts.
I phoned my GP Nurse this morning and also my MacMillan nurse. The MacMillan nurse hadnt been back to me as the referral was sat on her answering machine. Anyway she took sll my details and said she too was worried it might be spinal compression that might not wait until my oncologist appointment on Wednesday so she was going to contact the neurologist and comeback to me, which she hasnt done yet
In the meantime after speaking to my gps nurse the GP just turned up and did a complete review of my meds and has changed my anti-sickness tabs and also increased my slow release morphine rate as the oromorph seems to be making me sick but not the slow release. He too said I needed to get some radiotheraphy started in the hope it may help with pain and thinks if Oncologist cant offer this within 10 days I may be offered some steroids to put me over until I can start the radiotheraphy.
Touch wood In feeling a bit better at the moment, and doc has said I can increase the Zomorph by 10ml increments after 48 hours again if this dosaage doesnt work.
I’m so glad Ann that you have got hold of people who have taken you seriously - but still don’t let it rest. If you don’t hear keep chasing them. I find with the opiate drugs - like your slow release one and the oromorph it can take a few days for the side effects to settle down. Watch out for the slightest hint of constipation though - it can be cumulative! I find for myself that senokot - one at night - works usually, if not then I take movicol during the day. Generally I found that MST/oromorph didnt agree with me so I take oxycontin/oxynorm which is similar, and tolerate it much better. Hope someone contacts you soon.
Glad you are feeling a bit better on the new meds but as Dawn says don’t sit back.Keep chasing them,you need an MRI (its good to get your pain control sorted for that!)
AND if you get trouble passing urine get right on the phone.
Good luck
Love
Dot
xxx
Really pleased your GP initiated action for you today.
Well done for getting through…
Hopefully you will be more comfortable and know psychologically that you are in their care and they recognise your pain and angst.
Hoping for even greater progress when you next post.
Hi Ann, So glad to hear that you’ve made some progress with the ‘professionals’ and pleased to hear that you are feeling a little bit better today. I agree with everyone else tho that if you have any more symptoms don’t wait. Get right back on to them.
Good luck and let us know how you get on.
Hope everyone else is well today. Take care, lots of love, Dianne x x x