From the point of view of someone getting an annual medical check up, what would be the best tests to take for detecting myeloma, SMM or MGUS? Is an albumin test sufficient to indicate further testing, or what other tests could be done, that would be affordable?
Myeloma is so rare that it is unlikely to occur, but if there was a more routine test done, it could save a lot of pain and suffering for patients who are diagnosed in Stage 2 or 3!
Thanks for any insights on this matter.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Best test for detecting myeloma?
You raise a very interesting question, Nancy. Currently, there is no role for screening of asymptomatic patients of any age for monoclonal gammopathy. Such screening is believed to be associated with high costs for payers and undue emotional burden on persons with a low risk of progressing to a symptomatic disorder. Only 1% of patients with MGUS progress to myeloma or a related disorder per year.
Having said that, there is no doubt that the relatives of patients with myeloma or a related disorder who have witnessed the suffering of their loved one often are plagued with questions about the change in the course of the disease had it been diagnosed sooner. The field appears to be evolving, and patients with smoldering (asymptomatic) multiple myeloma (SMM) with certain high risk features may be offered therapy sooner owing to recently noted benefits of early introduction of therapy. However, such patients comprise only a small subset of SMM patients.
If myeloma is suspected in any person, three tests need to be performed initially: serum free light chain assay in combination with serum protein electrophoresis (SPEP) and serum immunofixation. These 3 tests together have a very high sensitivity in detecting myeloma, and, at least for the screening part, 24 hour urine collection can be avoided unless AL amyloidosis is suspected. For AL amyloidosis 24-hour urine protein electrophoresis in addition to the other 3 tests outlined above are required. If all are normal, it is highly unlikely that an individual has these disorders.
Having said that, there is no doubt that the relatives of patients with myeloma or a related disorder who have witnessed the suffering of their loved one often are plagued with questions about the change in the course of the disease had it been diagnosed sooner. The field appears to be evolving, and patients with smoldering (asymptomatic) multiple myeloma (SMM) with certain high risk features may be offered therapy sooner owing to recently noted benefits of early introduction of therapy. However, such patients comprise only a small subset of SMM patients.
If myeloma is suspected in any person, three tests need to be performed initially: serum free light chain assay in combination with serum protein electrophoresis (SPEP) and serum immunofixation. These 3 tests together have a very high sensitivity in detecting myeloma, and, at least for the screening part, 24 hour urine collection can be avoided unless AL amyloidosis is suspected. For AL amyloidosis 24-hour urine protein electrophoresis in addition to the other 3 tests outlined above are required. If all are normal, it is highly unlikely that an individual has these disorders.
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Dr. Prashant Kapoor - Name: Prashant Kapoor, M.D.
Beacon Medical Advisor
Re: Best test for detecting myeloma?
Nancy, thank yo so much for posing this question!
Dr. Kapoor, thank you so much for your very thoughtful response which explains the what as well as the why behind this. The detail you provide is so very helpful.
All the best .
Dana H
Dr. Kapoor, thank you so much for your very thoughtful response which explains the what as well as the why behind this. The detail you provide is so very helpful.
All the best .
Dana H
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DanaH - Who do you know with myeloma?: Myself, SMM as of 1/2012
- When were you/they diagnosed?: 1/2012
- Age at diagnosis: 54
Re: Best test for detecting myeloma?
Thanks very much, Dr. Kapoor, for your reply. I know that people with MGUS could easily spend their whole lives worrying about progressing to myeloma, and yet the probability of that happening is very low. That could have an unduly negative effect on their outlook on the future!
Probably most of us myeloma patients would have appreciated knowing about this condition at about the stage of SMM. Then we could have been monitored and treated at the earliest possible opportunity.
I think that with any check up with one's family doctor the CRAB symptoms could be kept in mind. Any suggestion of anemia, kidney problems, bone issues such as osteopenia, or elevated calcium levels in the blood could be further investigated.
I had an interesting conversation with someone who was spotted to have excess protein in her blood through being a blood donor. If you are a 'plasma donor' , your protein levels are checked, but not if you are a 'whole blood' donor. (I was a whole blood donor for many years). This person's blood was checked further by a hematologist and she was found not to have MGUS, which was a relief to her.
I was first diagnosed with osteopenia, from a bone mineral density test ordered by my family doctor due simply to being female and my age. At that juncture I was put onto a low level of bisphosphonates, Fosamax, and was also put on a waiting list for the 'Osteoporosis Clinic', here in Calgary. I would undoubtedly have had my myeloma dx'd at the Osteoporosis Cinic, since I know now that they check for that. Unfortunately the waiting list was nine months for the clinic, and before my app't, I did have four compression fractures. But because we already knew I had osteopenia, it was not such a surprise to get a dx of myeloma. I knew of others with myeloma also, even then, and since then have met many more patients too, mostly through my support group.
I guess that the knowledge is widely available to medical people, but still many patients do not have their myeloma diagnosed until they already are in stage 3 , with either lots of bone damage, debilitating anemia, or kidney failure!
So, IMO, this an issue of awareness and education, for both patients and medical doctors. If somehow someone could do an information awareness campaign aimed at primary care physicians that would be a good thing to do I think!
(Also, thanks Dana for your comment too!)
Probably most of us myeloma patients would have appreciated knowing about this condition at about the stage of SMM. Then we could have been monitored and treated at the earliest possible opportunity.
I think that with any check up with one's family doctor the CRAB symptoms could be kept in mind. Any suggestion of anemia, kidney problems, bone issues such as osteopenia, or elevated calcium levels in the blood could be further investigated.
I had an interesting conversation with someone who was spotted to have excess protein in her blood through being a blood donor. If you are a 'plasma donor' , your protein levels are checked, but not if you are a 'whole blood' donor. (I was a whole blood donor for many years). This person's blood was checked further by a hematologist and she was found not to have MGUS, which was a relief to her.
I was first diagnosed with osteopenia, from a bone mineral density test ordered by my family doctor due simply to being female and my age. At that juncture I was put onto a low level of bisphosphonates, Fosamax, and was also put on a waiting list for the 'Osteoporosis Clinic', here in Calgary. I would undoubtedly have had my myeloma dx'd at the Osteoporosis Cinic, since I know now that they check for that. Unfortunately the waiting list was nine months for the clinic, and before my app't, I did have four compression fractures. But because we already knew I had osteopenia, it was not such a surprise to get a dx of myeloma. I knew of others with myeloma also, even then, and since then have met many more patients too, mostly through my support group.
I guess that the knowledge is widely available to medical people, but still many patients do not have their myeloma diagnosed until they already are in stage 3 , with either lots of bone damage, debilitating anemia, or kidney failure!
So, IMO, this an issue of awareness and education, for both patients and medical doctors. If somehow someone could do an information awareness campaign aimed at primary care physicians that would be a good thing to do I think!
(Also, thanks Dana for your comment too!)
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
4 posts
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