What is Multiple Myeloma
Multiple myeloma (also known as MM, myeloma, plasma cell myeloma, or as Kahler's disease after Otto Kahler) is a type of cancer of plasma cells, immune system cells in bone marrow ...
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I was diagnoised with MM in November. I have been on Revlimid for two months. There was a hairline fracture in my ribs and so I have also been on pain medication. My bloodwork from last month showed I was getting better so the revlimid is working. For some reason I am still in a lot of pain. Could I have cancer in some other part of my body to be causing all this pain?
Posted on 01/24/09, 11:01 am |
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Hi ibjoy -- I have been on Revlimid for 2 1/2 years and it does wonders for my paraprotein (M spike), but it doesn't take away pain. On x-ray I have lesions in all my bones, including my skull. Revlimid doesn't 'cure' those lesions but it does seem to slow down others forming. My pain hasn't decreased over 6 years, in fact it has increased even though the MM is 'under control' with the Revlimid. Therefore I am on Fentynal patches (300mg) and I have 'break through' medication of 800mg Actiq lozenges. This level of medication was reached about a year ago, but gradually increasing the pain patches from 25 to 50 to 100...etc over a couple of years. I was worried that I'd be an addict, but when you are using these things for cancer pain you don't get addicted -- funny that, but true. I'd never have believed it, but after 6 years I do now. Not only do I have the holes in my bones, but I have 3 spinal crush fractures which puts a lot of pressure on my spine, especially when walking. I still try to walk for at least an hour every day on the basis of 'use it or lose it' -- walking in pain is better than not being able to walk at all!! And I don't want to be in a wheelchair or to use a walking frame if I don't have to. Actually, I've found that the shopping trolley at the supermarket makes a great walking frame and no one knows that I'm using it because I need support because I'm too tired to walk unsupported! Crafty isn't it?!
But in answer to your question, you probably will continue to have pain, even when the slight rib fracture heals. I hope for your sake that it improves, but for me -- it hasn't. Best wishes, Cath 
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Hi Ibjoy, Changes will not occur overnight. "A long journey takes many steps".
In 2001 when I was first diagnosed with MM I had extensive bone pain. My treatment was VAD and a bisphosphonate called aredia. It took 2 months before I felt a reduction in pain and more mobility. After 4 months my bone pain had reduced 80%. My pain relief was a morphine slow release tablet called kapanol and liquid morphine for break through pain. Kapanol is unavailable in New Zealand now and has been replaced with M-elson. Read more on my blog. www.supersidnz.blogspot.com
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