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crafty's avatar
crafty
Member
7 years ago

Bone pain

hi,
I had Ristempa on both my 2nd and 3rd course of chemo, refused it for my last chemo due to the crippling bone pain I had for several days from day 6-9, then managed with endone for the rest of the cycle. My last dose of chemo was just before xmas. 
My oncologist is aware of this and said at least 1yr, and just wrote me another script for endone. I have been mulling over this since she said this and want a better option.
My question is how long has others found their bone pain had hang around? And any advice on how to manage it ongoing? I do not want to continue taking endone for a long time. The pain has settled in my lower back, pelvis, knees and ankles. I am best lying rather than sitting and heat pacs work too. But this is not always practical and prevents me from doing things.
Also we are about to go away for a holiday and i am trying to work out how I can survive the 7hr drive to Robe without copious amounts of endone, and we won't touch on the camping that my hubbie is adamant  will be fine cos he will do everything......  I have decided to take that one as it goes, we have a camper trailer so at least we are not tenting it, but I am diverting.

  • Thanks everyone for your suggestions, I am in not so sunny or warm Robe, and the Panadol oesto is working well in taking the edge off my bone pain. Need to fall back on endone while in the car, so this is great.
    I can do some more walking here as it’s flat and foot paths, something that’s not available where I live unless I drive into town. I do walk around my house and driveway when issues with PN allow me. I have got up to 2km a day so far, and working on it.
  • @crafty 
    I note that you are Melbourne outer area
    Advice from above is perhaps exercise will help you 
    The link below is a program that I learnt about through BCNA, others on here have participated.  I was a participant in Term 2 last year and found it very beneficial - the program is tailored to you the individual and all participants are cancer survivors!

    Hope you check it out and give due consideration - it is free 

    http://www.exmedcancer.org.au/
  • I agree about a rehab program. Perhaps seeing an exercuse physiologist will help. I had terrible pain post chemo and when first on femera. Some is still present but it dramatically improved with exercise and movement..stiff backs hurt more. I had arthritis pre chemo in my spine and inactivity is my killer...as is slow walking and standing. Faster movement and pool work helps dramitically. I needed panadol osteo regularly daily and started on fish oil which helped me off the pain killers which increased my tiredness. 
  • The rehab program may be your saviour. I'm not trying to to be evangelical but, in the overwhelming majority of cases, exercise helps with this sort of pain. The process of moving the bits that are currently screwing you to the couch is not very appealing, but if you get the chance, please give it a go. Yes, you may need to take an extra pill to either get yourself through, or over, some sort of workout, but increased activity works on our brains as well as our bodies.

     I'm carrying a ridiculous amount of old injuries because I was a reckless idiot in my youth and I'm paying for that now, but moving saves my sanity. I figure if I'm already buggered, getting off my arse and doing something that makes me even more tired makes no difference, except that I've had some exercise. It does get better, but bloody hell it's a long road. I hope you get some relief.
  • The pain varies on managed with hot packs when lying on couch and vegging out on netflix (my now great friend again once the tennis has finished), other days vary from 1-4 a day. I try not to sit, or do too much in other activities, not that I can yet anyway. As this will have me maximizing the endone, so this impacts on me going out etc. The pelvis/back area is the worst. The pain varies every day. Sometimes its shocking once I wake, it really has no pattern or reasoning I can work out.
    the oncologist said the pain will settle in an area seeing I have had the bone pain, sometimes of an old injury and take the 12-18mths to go. Once I had the Ristempa it never seemed to really go
    The oncologist and GP don't seem bothered by the endone its more me. I don't believe its a good one to stay on long term, thought about the slow release but as I would need to take it everyday not keen to go there either, as I only want to take something if nothing else is working. I know I want everything.
     I was taking no medication before I got on the BC roller coaster, except when I thought of an occasional multi vit. A friend suggested acupuncture and I thought yeah great idea, but later realised it won't help bone pain but will be good for the muscle pain in my legs. I will run the bath on bad days and have a nice soak, which helps too.
    I will try the panadol oesto, next time we are in town for a chemist, I hadn't thought of that one. Trying to think of other alternatives.  Hadn't thought of a pain specialist either as I keep thinking its early days and it could get better. thanks everyone
    I get assessed next week for the rehab program so will ask those people for ideas as well
  • @crafty 

    I hope the detail below (attachment) helps you; if you already have this detail then hopefully it may help someone else

    A visit to your GP is probably a good idea so you can plan this holiday away, with some form of assisted comfort!

    Take care

    From the pharmacy brochure that hubby was given on discharge 

    Oxycodone - immediate release  (Endone, Oxynorm)

    Tapentadol - controlled release (Palexia SR)
    Tapentadol - immediate release (Palexia R)


  • The bone pain from the colony booster generally doesn't last more than a few days and tends to be confined to the larger bones. It absolutely sucks, but it is due to a specific process and shouldn't continue past that.    General pain from chemo is something else altogether and can, as some of us have found out, go on for far too long. 
    I've tinkered around with a variety of analgesics and even wandered into the world of Gabapentinoids to try to get some relief. I can totally understand your not wanting to take endone Indefinitely. Can you get access to a pain specialist?
  • Aarghh! Bone pain!  
    I would personally get off the endone!  Have you been taking Panadol osteo during the day?  I struggled with bone pain for a couple of years but I am averse to painkillers and prefer to keep myself distracted during the day and only rely on pain killers at night if needed but having said that, that is me, and we are all different so hopefully Panadol osteo during the day will help take the edge off!
    At present I am in a world of pain for a different reason, not BC, and take palexia at night time and Panadol osteo during the day if needed!
    Lucky you to be going camping in the camper trailer with a hubby doing everything!  Just need to work out how many stops to stretch the legs and gentle pain relief to get through the trip

    Best wishes and good luck with it!