Pain association with mesothelioma

Sorry to hear you are suffering so much pain.  First, Mesothelioma is not new.  It has been known since Victorian times.  Sadly incidences of the disease are increasing year on year, with number of sufferers expected to peak in the next two years. Until very recently, it was an “old man’s” lung disease, because after ingestion, asbestos takes forty to fifty years to affect the lungs.  Sadly, as unrestricted use peaked in the sixties and seventies, children and close relatives of asbestos workers became affected due to close contact with their work clothes, and now, ever-younger patients are presenting with the disease.  I know this information does not help with your pain, but, as the wife of a Mesothelioma suffer, I have been incensed at how little is being done in the UK to alleviate the symptoms of this vile disease.  Sorry for the rant, now back to you.  You should not have to put up with pain.  You don’t say what if any treatment you have been given.  Chemo is now available and benefits many patients. If your lung nurse cannot give you adequate pain relief, I would suggest you make an urgent appointment to see your GP, and ask for a referral to whichever specialist they think best able to help you.  Do you have someone who could go to the appointment with?

We have often found that two people add more weight to our case, although having said that, we are lucky that our GPs have always been sympathetic and caring.  

I hope you can soon get some proper pain relief, let us know how you get on.

4 years ago I lost my husband to this terrible disease, he was 64, ( You don't say how old you are or how you got it) he had worked with asbestos 40 years before for a very short period of time. Anyway when he was diagnosed he refused any intervention . They told him they couldn't cure it so he didn't want to go through the side affects of chemo or an operation. As it happened he lived for four good healthy years. He was only ill for the latter 2 months. He was amazing he never mentioned that he was in pain. He soldiered on at work until a week before he died. Had he been diagnosed today he might have had more time. things have moved on. I wish you luck and hope that you can get the pain under control. All the best for the season. Love Julie xx

Thanks Daffie and jujuc53 and hope you both had a good Christmas.  I am 59 and got meso. from my Dad's work clothes.  I suppose I have had it for around 4yrs + now as for 2 years the GP said I had recurrent bouts of pleurisy and one was pneumonia when in fact it was the meso.  Thank God they did a biopsy and caught it still in the early stages.  I have had chemo. 8 lots and all with Alimta.

I have been to my GP and was given two strong painkillers and I cant remember the names, but both made me sick.  The second lot was great for the pain, but I had to take an anti-sickness and was still sick.  In the end the pain subsided and now comes round in cycles and to be honest I would rather just live with it as I know it will go.  I take loads of other tablets as I am diabetic, high BP, thyroxine etc. etc.  I still consider myself fit and get out and about.

I know meso. has been on the go since the pyramids, but more people are getting it now after the 40+ years, but I find the doctors and oncologists dont know much, in America they are using cryoblation and in Germany another type of chemo. without poisoning the whole body.  It makes me sick that our Government can shove red tape at you and say they are helping cancer sufferers, well what have they done for meso. sufferers, they hoped we would just die and disappear.

Hope your husband is keeping well Daffie.

jujuc your husband was an amazing man, incredible really.  Who knows he may not have lived any longer with the poison chemo. brings with it.

All the best to you both.