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Re: No stage given at myeloma diagnosis: is that common?
We were told that with multiple myeloma the stages were only used for research purposes. They don't reflect the outcome like stages do in relationship to other cancers. They may give a stage for research reasons, but it doesn't mean anything to the person being treated.
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MJP
Re: No stage given at myeloma diagnosis: is that common?
When I was initially diagnosed, 19 years ago, I was just told that I had 6 months to live. They later revised that to 1 1/2 years. I love proving them wrong!
When I asked, later, my doctor explained to me that it was hard to determine a 'stage' due to the biopsy needles' chances of hit and miss. That is to say, it could go into a certain part of my pelvic bone, through a myeloma rich environment, and give a very high reading. On the other hand, it could go through an area where there is little to no activity and give a low reading.
This may differ with different types of myeloma, but I now have free light chain blood tests (I have nonsecretory myeloma) that measure my activity. We find these accurate, but it isn't used to 'stage' the disease, rather to base treatment upon the results.
When I asked, later, my doctor explained to me that it was hard to determine a 'stage' due to the biopsy needles' chances of hit and miss. That is to say, it could go into a certain part of my pelvic bone, through a myeloma rich environment, and give a very high reading. On the other hand, it could go through an area where there is little to no activity and give a low reading.
This may differ with different types of myeloma, but I now have free light chain blood tests (I have nonsecretory myeloma) that measure my activity. We find these accurate, but it isn't used to 'stage' the disease, rather to base treatment upon the results.
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GaryH - Name: GaryH
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Nov./97
- Age at diagnosis: 44
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