Concerned about potential Myeloma

Hi Stephen,

I am really sorry to read what you are going through and I am really hoping that you will get some answers soon that will lead you back towards better health.

For what it is worth, my pain was like a dull ache in between my shoulder blades. I had fallen off a fence a few months previously and I put it down to that. I went to a physio and they said I looked like I had curvature of the spine which was unusual for someone in their mid-30s. Little did I know it was a compressed vetebrae in my back. Indeed, I would have soldiered on with it if it were not for a large blood clot in my leg which meant I was admitted to hospital and they found it following loads of scans whilst I was an in-patient. I also had lesions in my pelvic area but oddly they were causing me no problems.

The difficulty with myeloma is that lesions can appear anywhere and they tend to be different from patient to patient. The best way to detect myeloma I believe is through specific blood tests, so if you are concerned at all that you might have myeloma, that is the route I would go down, although I am sincerely hoping that it isn’t. 

All the best

Greg

Thanks Greg 

It would be my second type of cancer diagnosis if it is. I have a lot of pain that moves around my body, its in my hip, my cheekbone, then in my toes, then my back...lots of different areas at different times, but its the same area's if you know what i mean. Its very difficult getting the oncology consultant to do anything he just says its not my thyroid.  The GPs are even worse. I had blood tests in July  but they were normal apparently. You said specific blood test   what is that??

Hi Stephenhat,

I am far from a medical expert so please take everything I write with a pinch of salt. I believe you need a specific blood test which looks for paraprotein or abnormal light chains in your blood. I don’t think it would necessarily come up on a standard test and there have been cases where myeloma has been missed by a standard test. Having said that, typically if you have myeloma, you can often have anaemia as the abnormal plasma cells tend to crowd out the normal cells. So if your standard blood tests came back ok, that is a good sign, but if you are still worried, ask the medical teams to do a specific test for myeloma, which will specifically look for abnormal paraprotein or light chain levels.

As to bone pain, it is so difficult to say as myeloma patients can be affected anywhere where there are bones. My advice would be to focus on the blood tests if you are keen to know if it is myeloma or not.

I hope this helps.

Greg

Thanks for your reply greg.

I'm concerned it may be myeloma obviously,because the bone pain is terrible.  Ive had no breaks or falls or anything. I'll ask about getting those specific tests. Ive struggled with increasing pain over the years since initial cancer diagnosis. Thanks for your advice anyway

Hi Stephenhat, as you’ve heard from greg and found yourself the experts are quite slow to say myeloma. 
we went a few weeks with going to nurses, Doctors on numerous times only to be told it’s a pulled muscle my wife had which was excruciating for her.

But as greg points out a definite diagnosis is the only way to go as it’s there to see but it mixes the professionals up for a while.

But don’t sit back,keep pushing them,in my wife’s case a body scan and the high levels of calcium showed what it really was.

Good Luck 

john

Hi did you ever get answers?

Well, after my wife being on a ward and they did literally nothing the decided a scan was necessary. Which then confirmed all the changes to her bone structure due to the myeloma. Can’t believe we are 2yrs now into remission and still alive and reasonably well considering. 
fell free to ask whatever if your new to myeloma.

john