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please could anybody shed any light on this ? when i was diagnosed n dec 09 with liver mets i had really bad pain in my shoulder the onc said this is referred pain as the liver may be swollen and it sends pain to shoulder via nerve endings, i had no bone mets and nothing showed on my ct , but my shoulder xray showed “natural bonding” , the pain is horrendous and has now gone on for 6 weeks i am on capeciatbine and herceptin has anybody else experienced this ? could it be frozen shoulder , arthiritus etc ???
please help
galen x
Hi Galen
Sorry cant help you, but you should persist and get the onc/docs anyone to help find out why it is hurting.
But I do have rheumatoid arthritis - not really bad, but bad enough that sometimes my feet dont work, my fingers may swell, and wrists hurt and sometimes my shoulders, I cant move my arms much as hurts. But this comes and goes, although am on a drug called sulphazalasine (spelt wrong) for my arthritis.
I too am also on capacetibine and herceptin, on my 4th cycle of capacetibine now.
I would def persist in finding out what is going on though, but could be arthritis, but I really dont know.
Take care
Dawn
xx
Hi Dawn
Thanks for your reply, im going to the docs tomorrow, i need to get it sorted the pain is getting me down , how are you on capeciatabine and herceptin? im not doing too bad shoulder pain taking over other side effects!! i have another round then a scan, have you had a scan yet if you dont mind me asking just wondered am i expecting too much too soon if its working or not ? thanks for advice
love galen xx
Hi Galen
Have just sent you a pm about this (in response to your pm) as hadn’t realised you’d started a thread about it. So sorry for repeating myself …
I think it could indeed be deferred pain from the liver. I have had it off and on over the 2 1/2 years I’ve had liver mets(and blamed other things at times as well - have mild lymphoedema in my arm and also have had surgery on my right shoulder for a recurrent dislocation). However, it was quite apparent what the problem was when it happened on the operating table when I was having the coils put in as part of the SIRT procedure. When he was working in one particular area of the liver (so it’s only one area of the liver that can cause this, I think), I had excruciating pain in the shoulder and the consultant confirmed that it was because of what he was doing. And sure enough the pain stopped when he moved onto another area of the liver.
Think it is worth asking about again tomorrow though, as Dawn says, and trying to get some pain killers that help.
In terms of scans, I had a very quick and positive response to capecitebine (not HER2+ so not on herceptin), so hopefully you should see things have shrunk a bit (or at least not grown any more - “stable” is good!!).
Take care. Kay xx
hi
just back from docs he said he is sure its deferred liver pain and maybe a bit of side effects from other treatments eg , herceptin etc, he examined my neck as its painful and was contacting my onc about an enlarged gland he felt in my neck at the bottom near my collarbone, god the worry is never ending at the moment! anyway hopefully my new bag of tablets will help!
love galen x
Hi Galen
Glad the GP was quite clear about what he thought it was and hope that your new tablets help control the pain a bit more - I really do sympathise as when I’ve had it, it’s been really painful. As well as the very obvious time when I had it on the actual operating table, I have had it sometimes during treatment - particularly after the SIRT - and they actually felt that it was a sign the treatment was working and damaging the tumours. Hopefully it might be a good indicator for you as well - doesn’t help deal with the pain itself though!
Not sure what to say about the gland in your neck - are you going to be seeing your onc soon? Hopefully soon and then you can get some answers from him too.
Take care. Kay x