Just got my yearly bone survey results. My doctors have been trying to figure out if I should start treatment for relapse or not. One says yes, right away; one says I can watch and wait.
Anyway, I've had osteopenia for a while but now there are comments about subtle permeative lucencies in an arm bone. Also noted are subtle lucencies in skull suggesting early myeloma bone involvement.
Would this be considered enough to satisfy the B requirement of CRAB? No distinct lytic lesions. Doctor plans to order a spinal MRI at my next appointment.
M protein is 17 (IgG) as of last blood work. Has been slowly going up.
Background: watching and waiting for the last year or so after I had m-spike show up following a 5- year complete response from transplant in 2010.
So hard to figure out timelines for this disease – when is enough to start treatment, etc.
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Re: Osteopenia, diffuse lesions, and the B in CRAB
I had some "lucencies" detected in my original skeletal surveys when I was first being diagnosed that my doctors thought were due to my multiple myeloma. But then a follow-up PET/CT definitively let me now that they were not myeloma-related. Also, two other radiologists could not even see the lucencies that the original radiologist had noted on my x-ray.
Also note that some doctors would suggest that if you tell a radiologist that a patient has multiple myeloma, that some of those radiologists will find myeloma-related disease where there is none. I would therefore first try to verify the x-ray findings of the suspected areas via another imaging modality. I find that it is tough to find facilities that do whole body MRIs, but PET/CTs can be conducted most anywhere.
As far as the osteopenia is concerned, I believe that some doctors might suggest treating that condition with only a bisphosphonate if there is no clear, new bone damage or other CRAB issues associated with the osteopenia ... depending on the degree of the osteopenia. But obviously your doctors have a much more complete picture of your situation than us laymen on this forum.
Also note that some doctors would suggest that if you tell a radiologist that a patient has multiple myeloma, that some of those radiologists will find myeloma-related disease where there is none. I would therefore first try to verify the x-ray findings of the suspected areas via another imaging modality. I find that it is tough to find facilities that do whole body MRIs, but PET/CTs can be conducted most anywhere.
As far as the osteopenia is concerned, I believe that some doctors might suggest treating that condition with only a bisphosphonate if there is no clear, new bone damage or other CRAB issues associated with the osteopenia ... depending on the degree of the osteopenia. But obviously your doctors have a much more complete picture of your situation than us laymen on this forum.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Osteopenia, diffuse lesions, and the B in CRAB
Thanks for your insight. The report notes increasing changes compared to the previous years. Not so much a one-off thing. I suppose I will just have to wait for the MRI and see what that shows.
Watching and waiting ..., more like waiting and stressing!
I did pamidronate (Aredia) treatment for about three years and went off it a few years ago as my doctor felt the risks outweighed the benefits from extended treatment with it due to my age.
Watching and waiting ..., more like waiting and stressing!
I did pamidronate (Aredia) treatment for about three years and went off it a few years ago as my doctor felt the risks outweighed the benefits from extended treatment with it due to my age.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Osteopenia, diffuse lesions, and the B in CRAB
Got it. But did the xray show any new developments on your spine? You had only mentioned new lucencies on the arm and skull and not your spine.
As you probably know, the spine is the most common area to be affected skeletal-wise by multiple myeloma and it would make sense to MRI it as a matter of routine monitoring. But the new developments that you noted are elsewhere, and wouldn't you want to also validate those specific findings? Am I missing something?
As you probably know, the spine is the most common area to be affected skeletal-wise by multiple myeloma and it would make sense to MRI it as a matter of routine monitoring. But the new developments that you noted are elsewhere, and wouldn't you want to also validate those specific findings? Am I missing something?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Osteopenia, diffuse lesions, and the B in CRAB
I am in Canada so imaging is usually just kept to standard tests. The spine MRI is part of my regular follow-up, as is the bone survey, so my doctor doesn't usually order any additional scans on top of those. I think she will see what the MRI shows before considering additional imaging.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
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