I have never heard of that Spike, and I will certainly look into it, Thanks a lot. But isn't it odd how we often have to suggest our own ideas on courses of treatment etc? Once upon a time, the medical profession told us what they would do, and we bowed and scraped and said thank you very much! I love it that patients have so much more power, and knowledge, but it does seem a shame we have to push for what's best for us, sometimes.
Your wheelchair story made me laugh, thank you.
I've just had an Onc appointment today and my Onc spoke with me at length and mentioned an operation called Vertebroplasty. I see from your other postings that you have had ops and I wondered if you had already had this. I'm waiting to hear if I'm well enough to have this op and if I'm a good candidate. I'm pleased that swopping to the MST has really improved your breathing. Long may it continue.
I have swopped from Oxycontin to MST and guess what? Breathing has improved!!
As for shopping in a wheelchair; my sister, who I love dearly, has to be the worst offender. We go to a large m&s outlet near home, and I am happily browsing through what I want to look at, when she drags me off to the other side of shop!! I fight to regain possession and head back off. Its like some kind of game, and I am sure if anyone watches, they would have a right laugh! I am perfectly capable of wheeling myself round, Thank you very much!
I've not long returned from a 2 week holiday so sorry for late reply. I too find it interesting that you have breathing problems possibly associated with the Oxycontin. I have trouble getting to the top of my breath. I was originally on tramadol and seemed to it suit okay but then was told that it was affecting my bones when a couple of the bone profile blood tests came back so got switched and I've had no end of trouble since. I've had problems trying to convince anyone that my breathing problems seemed to have started with the Oxycontin.
As for the wheelchair, anyone that was pushing me seemed to forget that I might want to look at what they were looking at if we were out shopping and sometimes got left facing a wall! I think it takes a lot of getting used to from both sides.
Thanks for your info.
I, too, have had vertebrae problems, endless ops and no relief of pain. I tried the Fentanyl patches topped up with Oramorph when needed, but unfortunately developed an allergic reaction to them. I am now on Oxycontin and Oramorph, and I have been having terrible problems breathing. As an ex-nurse I thought I knew most of the side effects, so I hadn't linked it to the Oxycontin until I read your thread!! I have a couple of small nodes of my left lung, and an 'area of ill-defined oacity' on right lung, so I have been a little scared it might due to this. My Gp has put me on a Ventolin inhaler which helps a little, but I am still having to take great big sighs to try and catch my breath! So, it's all very interesting!
As for the wheelchair thing; I have got quite used to it now, but still find shop folk talk to the 'pusher' not me, even when I am using my card for the transaction!! Really annoying. Some mornings I get up and long to go for a really long walk, then remember I can't, and get thoroughly fed up!
Ah, well, I am still up for wheelie races with the grandchildren in their pushchairs, so I guess it can't be all bad!
Best wishes, and thanks for starting this thread. I shall go to bed a little less worried about my breathing now!
I had the same problem with all of the controlled drugs when we went to France.All hell was let loose trying to get this letter,did not want to be arressted at customs for drug running.They never even asked for it.Although they did search or caravan for illegal immigrants.(never found them either).Wish you luck and hope you have a relaxing holiday and come back ready to battle on.
I'm glad you felt the wheelchair trip was so liberating. I went out with my husband on Sunday on a practice run. I have to say he still needs a bit of practice as he left me in the middle of the walk way in John Lewis whilst browsing and I almost had to get out of the wheelchair to move myself out of the way of someone with a buggy! Still, I'm off on holiday tomorrow and taking the wheelchair so there will be plenty of chance to get it right.
I've had Oramorph in the past and haven't tolerated that particularly well. I found it made me very sleepy. Oxycontin works better for me and enables me to carry on with a more normal life. I am however on quite low doses compared I believe to dawnhc. Everyone seems to tolerate the drugs differently. I don't like the side effects of any of the drugs to be honest and I could probably do with upping my dosage but hate the dry mouth in the morning and probably the sleepniess that will come with the higher dosage.
I'm obviously having to take the "controlled" drugs on holiday with me (Spain) and have had to get a letter from my GP explaining why I've got them. Just hope I don't get stopped at Customs and asked to empty them all out of the hand luggage!
Well I'm signing off for an early start tomorrow morning but will be back in a couple of weeks to see how everyone is doing. I just hope that I can cope with the heat on holiday and that I've brought all/enough of my pain medications.
Best wishes to all.
I posted on thread about disease deterioration...asking about difference between oxycontin and zomorph.
I am so sorry to hear about your horrible bone pain. You are right that there are so many differences amongst us about pain. I never guessed that pain would be such a problem to me at this stage...mine is nerve pain caused by tumours pressing on neves...tumours are in my neck and chest wall and pain in my shoulder and top of arm. At times it is grim...like you I am just doing the wheelchair thinking...I went round the National Portait Gallery in one last week and it was liberation!
Hate this pain..so scared of how things may develop. Hospice people like Sue Ryder will probably be better than your oncologist. I think oncologists protect themselves from threality of their drugs failing.
Thanks for all your replies. It does really help to get other people's perspective on their disease and it does show how diverse our problems are even though we have similar symptoms. Carolinew has hit the nail on the head when we talk about the same Oncologist being quite difficult to talk to and not really interested when you mention symptoms you are having. I'm probably just clutching at straws when trying to find out if Oxycontin could be affecting my breathing because it is hard to come to terms with the fact that my spine is in such poor state of health and I don't seem to have been able to do anything about stopping it. Also the problems do appear to have started when I started on the Oxycontin.
Dawn, I hope that the combination of Pamidronate and Herceptin are really working for you. I've tried the Avastin route and unfortunately have had slight spread in the lung and liver again and so have stopped the Avastin and there is the possibility that I shall start back on Herceptin but I have another issue affecting the start of any other treatment. 8 weeks ago I had an abcess/infection in my right armpit where I had auxillary node clearance 8 years ago. I'm still battling with it now and the recovery process is so slow. Carolinew, you'll be interested to know that our "Onc" wasn't particulary interested in dealing with it for at least 2 weeks even though my GP phoned and faxed her concerns! Anyway, all chemo treatment is on hold until this has cleared up.
Sorry, I'm digressing here but it is so good to get it all out. I do look at the forums most days but can't always get my head round what comments I want to make so I admire so many of you who keep this all going. It really is helpful.
I haven't got another Oncology appointment until 24th August so will "try" to voice my concerns with my Onc about the bone problems and if there is anything that can be done. I'm not altogether hopeful. One good thing going for me lately is the fact that I visit a local Sue Ryder hospice and they have been so caring and supportive, unlike my own Oncologist.
Take care everyone.
nice to see you posting again, just sorry it is because you are having problems.
I am having breathing problems and I go for a muga scan on Friday all the other checks to rule out heart problems have been clear so far. My onc has seen these breathing problems with another of his patients and she like us had been on avastin so not sure if yours could be related.
My back seems to be o.k. so far and that is due to pamidronate.
It is such a struggle isn't it?
I'm sorry to hear your news. I don't have it in my bones but i lungs and liver and lymph system and i take oxycontin. I havn't found any breathlessness whilst on oxycontin. I was out of breath before they drained my lung last year but since then no problems.
I think you may be under the same cancer hospital as me and if you have the same onc she can be a bit difficult to talk to so I hope you get some answers soon
I have been taking oxycontin and I do get short of breath,perhaps you could ask for some tests.I have found that my gp is very good if no one else listens to me.I wish you the very best as we all need a bit of moral support.Off for Zometa and chemo soon.
Hi Spike, I'm really sorry to hear your latest news. I've been living with bone mets for at least 6 years, probably 7 or 8. My vertebrae are getting closer to each other each scan even though I've had years of no active cancer thanks to good responses to treatment. Like Dawn I wonder if there is any surgery option? Could you be referred to an orthopaedic surgeon rather than oncology? Not the same but I have a hip replacement due to bone mets and see the orthopaedic dept every year for a check up. I hope things can improve for you...x
Spike I am so sorry to read your news. I know back in February you took part in the thread about bone mets being chronic! For all of us with bone mets what is happening to you just hilights that debate. Strange how I have believed all this time that it is the pamidronate that is keeping mine relatively stable but I suppose it is the combination of that and herceptin for me.
I am on oxycontin and have been up to 80mgs am & pm although lower at the mo. but haven't noticed any breathing problems. Is there the possibility of any surgery to relieve the pressure.
best wishes to you.
Hi, I'm currently taking Oxycontin for severe bone pain. Following a CT scan last week, it was reported that a number of the vertebra (back bones) have become wedged due to the spread of cancer in the spine which has caused my spine to collapse and therefore bend forward. Because I'm leaning forward, I'm squashing my lungs more which may account for the lack of breath.
I was wondering if anyone has had breathing problems whilst taking Oxycontin. I've been looking up the side effects and many websites mention slow or difficult breathing but when I consult the "professionals", none of the doctors seem to think it is the tablets.
I'm absolutely gutted with the vertebra collapse as it is having a huge impact on my mobility. I can't stand for more than 3-5 mins and have now had to resort to being pushed around in a wheelchair. I have also got a small tumour in one of my lungs and a couple of tumours in the liver but these seem to be the least of my worries currently. I never thought that the bone disease could have such huge implications.
Anyway, best wishes to all going through this terrible tough time.