Hi everyone
Just got back from seeing Onc with results of bone scan. I have got further bone spread in spine, sacral iliac joints and acetabulum (cup part of hip joint). This was not unexpexted as I have been having hip/leg pain and stiffness since finishing taxol in Mch (which didnt work). I am now on second cycle of Xeloda. Discussed dose of radiotherapy as stiffnes really restricting my walking at times but would have to postpone Xeloda by about 5 weeks as cant have together. Dont really want to do this. Onc suggested that I take MST which is a slow release morphine. I am a bit freaked by this as I feel that taking morphine is the beginning of the end. I know I shouldnt feel like this as I am a nurse and should know better but I was wondering if anyone else is taking MST for bone pain and if it has helped with their pain and are they having any side effects. I am currently taking co-codamol and voltarol which helps but doeasnt take pain away completeley. Have tried tramadol but felt spaced out and drowsy.
I also have lung and liver mets but dont have any pain from these.( touch wood)
Maddison
My wife has been on Morphine patches for two years now. Along with top up tablets they have left her virtually pain free all that time.
The patches are supposed to last 72 hours but we have noticed she seems to get " withdrawal " type symptoms after about 36 to 48 hours sometimes so now we change them at 48 hours regardless and us servidol tablets to top up.
Hop that helps a bit.
Terry
Hi Maddison
My wife is in a similar situation, the slow release morphine works great for her. There is a wide range of dosage that can be taken, tha amount needed will most probably be way down the scale of the max that can be used. My wife takes Zomorph slow release, 1 x 10 mg capsule lasts for 12 hours, a very small dose indeed but it works really well. At this level it is unlikley you will have any side effects, occasionaly she ups the dose or combines with Oramorph, liquid Morphine Sulphate, again at 10mg per teaspoon full (5ml) for night time. Occasional constipation can be a nussance but diet or magnesium sulphate can sort this out.
I have seen doses of 200 mg possible on the internal leaflet! At the top end of the scale it is given via needle into veins in hospital for serrious pain so as you can see the dose that may suit you will be way down the scale. My wife occasionaly drops the Morphine and switches to other pain killers, even paracetamol depending on how she feels. she has pretty much an open line to the GP, just askes him for stocks what she wants and he arranges it for her to pick up at pharmasy, she works out her own pain control. She has found that the pelvic pain varys, sometimes it can go away for a month or longer, somtimes its worse. Onc says bone pain can wax and wain - why, (asside from the obviuos), is not known.
Taking pain releif is I believe a far better option than radiotherapy, probably wise hold off this for as long as possible and save in case you need it for the future.
(a) there is a limit to radio dosage, and once this is used up so to speak thats it.
(b) more importantly, depending on the area radiated the pelvis is a major and vital area where significant bone marrow lives - i.e. your blood factory. Whilst marrow will slowly recover from radio treatment this has implications for existing and future, (if imminant), chemo due to reduced blood counts.
(c) radio side effects which you are probably aware of, some can be quite unplesant I believe.
Oops - sorry must sound very patronising, re-read your post and you are a medical profesional so I have rambled on but may be of interest to others so I will leave as is.
Best regards
Dave
Hi Maddison - Lots of good advice above from those who know. So I am just writing this as one nurse to another! So sorry that you got disappointing news today about the spread of the bone cancer. It sounds from your posting that you feel it might be helpful to take morphine, but I do understand your reservations. I think that is because, as nurses, we see it used a lot in hospital, and often towards the end of people’s lives, and therefore you are associating it with “the beginning of the end”.
But as Dave, and Terry, have expressed so clearly, it is a remendously effective pain reliever that is used in all sorts of different situations, in a huge variety of doses, and tailored to what you need so that you get maximum pain relief and minimum side effects. There is nothing more draining than being in constant pain, and when you are you are so limited in what you feel able to do. Why not give the morphine a try and see how you are and the difference that it makes to the quality of your life. Put completely aside any associations of it being used to ease pain at the end of life - that is NOT why you would be taking it, and NOT what it would be heralding! Good luck, and please let us know how you get on. Sarah x
Hi everyone
Thankyou for you comments. Terry and Dave - its great to know that you wives are managing well with the Morphine with little side effects. Dave - dont worry you didnt sound patronising. Although i am a nurse with a lot of experience in this field once it it happening to yourself all your reasoning flies out of the window. I have even had conversations with patients regarding starting morphine so I should know better. I think its because I never thought it would happen to me and that i should be the one caring for others and not have to have people caring for me. Like your wife Dave the pain does vary and I get a lot of stiffness which makes it difficult to walk. does your wife experience leg stiffness?
Sarah - thanks for your comments. I see my Onc again next tues so will ask about the mst. Also in touch with macmillan nurse to see if there are any other combinations I can try. I know it doesnt mean the end of life but its very hard to get that though out of my head. thanks for your support.
Maddison
Hi Maddison,
I have been suffering with severe back pain since March, such that I can’t sit or walk; I can only lie or stand. Had MRI but no mets were found, but pain so bad I am on 30mg MST twice a day, plus oramorph 20mg up to 4 times a day, and when I was in hospital they even added in morphine injections! To reassure you, I can still function completely normally with high doses of the drug, although I obviously won’t risk driving. The worst side-effect is nausea, so I always have some domperidone standing by. I still can’t understand why I am having such severe pain when they can’t find anything but degeneration of vertebrae, and I am constantly worried they have somehow missed mets.
Obviously, we all react differently to medication, but give it a go. Hopefully it will ease pain.
All the best, Annie
Hi maddison
Yes she does get stifness from time to time but this is only a minor irratation compared to all the problems she has had with the pelvis and leg.
Over the last couple of years she has had DVT, spinal compression and hip joint replacement (5 weeks ago), all in same leg, and is now doing great.
I think stifness is a common problem, and indeed can be agrivated or caused a lot of the time by the medications esp hormonals I believe.
My wife has found that anti-inflamatorys can work well if its bad.
I don’t want to sound pesamistic but if you ever get numbness, tingeling or loss of strength in leg insist on MRI scan to spine to check bone as well as soft tissues -long story in ‘our’ case which I won’t elaborate on as its a bit off topic!
Bone scans are a usefull comparison and spread/reduction tool, I am told they just show ‘activity’ in the illuminated areas and can’t differenciate between good or bad, i.e. activity could be bone repairing itself esp if you are on biophosphate drugs - MRI, (my wife has had a couple), is expensive but fantasticly detailed.
I do hope things improve for you soon
best regards
Dave
moderator - why is the spell checker always not working? I could really use it pls!
thanks everyone.
I had along chat with my Macmillan nurse and i am going to start with Oramorph today. She said it would be better to start with as if I felt awful the effects dont last as long as if I was taking MSt. I’ve got plenty of antisickness medication just in case. My main conern is driving. She said I have to inform insurance and not to drive until dose stable. I am in car every day and would rather have the pain than be stuck in the house. anyway we are away this weekend with no driving so I’ll see how it goes. will let you know how I feel after weekend.
Dave - Cord compression is always at the back of my mind. I see onc ontues so I am going to ask about MRI. I had one 2 years ago when first developed spinal mets.
Maddison
Hey
I take 50mg of MST twice a day and lots of anti sickness which has it under control…most of the time. Its not the beginning of the end far from its just a better way to control pain pallative nurses and doctors are great for advice so get referred to one if you havent got one.
Ive got bone secs and its now in my lymphs by my heart and kidneys so having second round of chemo so the mst helps with the side effect of pain associated with Taxotere.
I have oramorph for relief if its gets too bad but i have to keep a diary of what im taking as they like to increase your mst and not have you taking oramorph…think its a cost thing! But may be a health thing too as ive noticed Ora can burn the throat sometimes.
Good luck
Hi everyone
Just to update you on how I’m doing. Started taking the Oramorph 4 hrly last friday and have been taking between 50 and 60 mg a day. It has helped with the pain but not taken it away completely. going to see gp today and to ask for MST 30mg bd and take Oramorph inbetween if needed. I havnt had any side effects and dont feel drowsy at all.
Main problem I have is blistered feet from the Xeloda. Going to see gp as think is now infected. have been putting on loades of cream to prevent it but it didnt help. going to add separare post on here to see if anyone has any suggestions.
Maddison
That’s great that you are being able to take the morphine without side effects or drowsiness, hope the changes you are making mean that you soon have complete control over the pain. Sorry to read about your feet - that sounds so sore, and a nightmare to wear shoes. Hope you get some helpful suggestions soon! Thinking of you. Sarah x