I had a bone scan done yesterday, and the report will be sent to my rheumatologist who also ordered a SPEP (but no urine testing). I should know in the next week what the results are.
I don't know if this workup is enough for me to be able to rule out smoldering myeloma / multiple myeloma, because I read that bone scans with tracer (Technetium 99) are not ideal for multiple myeloma, because they reveal osteoblastic lesions and not lytic lesions. Does anyone know anything more about this?
If all my blood work (incl SPEP) and the bone scan come back normal - should I leave it at that, or should I request urine tests to rule out light chains Bence Jones, and a different scan to see if there are lesions developing? I know some people also have non-secretory myeloma - how does one even test for that?
I'm still having daily intermittent bone pains: hips, ribs and back (shoulder blade, spine, shoulder bone) and now my ankle bone - on the bone itself. None of it is bad pain, though the back pain feels unpleasant and gnawing. All these dull pains are well defined and localized.
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Re: Wondering if I have MGUS or smoldering myeloma
Hi Susan,
A couple of things.
An SPEP is a good start and you might just want to wait to see how those results turn out before taking any next steps. But you are right that an SPEP won't always catch multiple myeloma in those that are non-secretory. (about 20% of patients), especially if he didn't do a 24 hour urine test. Non-secretory patients use serum freelite chain assays (to look for Bence Jones chains) to track the disease. I'm going to guess that he likely ordered some of the other tests that are included in the link below (freelite assay, immunoglobulin levels, immunofixation, etc).
It's curious that your doctor ordered a bone scan to look for meyloma issues (or was he looking for something else?). You are right that the kind of bone scan you describe won't pick up on lytic lesions and are instead used to look for blastic lesions (which aren't caused by multiple myeloma, but are instead found with other kinds of cancers like breast cancer). For multiple myeloma screening, you should be getting either a full body Xray survey, full body MRI or a PET/CT, but not a Technetium bone scan. The bone scan you describe simply isn't that useful for multiple myeloma screening. If you get re-screened, we can provide info on the pros and cons of each imaging mode.
This link describes the tests that one usually gets if there is a suspicion of multiple myeloma. Hopefully your doc ordered up most of these laboratory tests.
http://myeloma.org/pdfs/IMF-U-TestResults-2011_f1web.pdf
A couple of things.
An SPEP is a good start and you might just want to wait to see how those results turn out before taking any next steps. But you are right that an SPEP won't always catch multiple myeloma in those that are non-secretory. (about 20% of patients), especially if he didn't do a 24 hour urine test. Non-secretory patients use serum freelite chain assays (to look for Bence Jones chains) to track the disease. I'm going to guess that he likely ordered some of the other tests that are included in the link below (freelite assay, immunoglobulin levels, immunofixation, etc).
It's curious that your doctor ordered a bone scan to look for meyloma issues (or was he looking for something else?). You are right that the kind of bone scan you describe won't pick up on lytic lesions and are instead used to look for blastic lesions (which aren't caused by multiple myeloma, but are instead found with other kinds of cancers like breast cancer). For multiple myeloma screening, you should be getting either a full body Xray survey, full body MRI or a PET/CT, but not a Technetium bone scan. The bone scan you describe simply isn't that useful for multiple myeloma screening. If you get re-screened, we can provide info on the pros and cons of each imaging mode.
This link describes the tests that one usually gets if there is a suspicion of multiple myeloma. Hopefully your doc ordered up most of these laboratory tests.
http://myeloma.org/pdfs/IMF-U-TestResults-2011_f1web.pdf
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Wondering if I have MGUS or smoldering myeloma
In terms of the scan, I can only guess that he was looking for arthritis or something osteo. We discussed possibilities of rheumatoid arthritis, though he agreed it wouldn't cause the types of pains I'm having, certainly not in areas that are clearly just bone. I read that bone scans (Tech) are often mistakenly ordered by some doctors in a workup for myeloma. I also want to rule out MGUS, because I've read quite a few people on here who say they have rib and bone pain, and yet only have MGUS because of their lab numbers.
Thank you for the link. I'll follow up here when I get all the results next week. I don't know if he ordered the other tests you mentioned - I did see SPEP on the stickers I took down to the lab. I think I may have some kind of peripheral neuropathy - my other complaint to him was a longstanding, intermittent and painful burning in the bottom of my right foot when I walk for a short time, and I'm now getting odd burning sensations on my skin in different parts of my body.
I can see this is going to be a long process to diagnosis! It won't be the first time. My hep C took years to figure out.
Thank you for the link. I'll follow up here when I get all the results next week. I don't know if he ordered the other tests you mentioned - I did see SPEP on the stickers I took down to the lab. I think I may have some kind of peripheral neuropathy - my other complaint to him was a longstanding, intermittent and painful burning in the bottom of my right foot when I walk for a short time, and I'm now getting odd burning sensations on my skin in different parts of my body.
I can see this is going to be a long process to diagnosis! It won't be the first time. My hep C took years to figure out.
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Sara
Re: Wondering if I have MGUS or smoldering myeloma
If some stage of multiple myeloma is involved, it's pretty straightforwad to diagnose if you get all the tests (i.e. it doesn't have to be a drawn out diagnostic process if there really is a suspicion of having this disease). Good luck and let us know how things turn out.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Wondering if I have MGUS or smoldering myeloma
Thanks Multibilly. I mean it may be a while before I find out what's going with me (I'm hoping it's not myeloma or MGUS etc), and also being tested for autoimmune diseases too. I'll let you know what happens.
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Sara
Re: Wondering if I have MGUS or smoldering myeloma
I got some results back:
My SPEP is normal and says "no myeloma band detected" which I'm of course very relieved about. My rheumatologist didn't order a UPEP though, but agreed to refer me to a hematologist for this and the remainder of tests to rule multiple myeloma out. I also didn't see any indication that an Immunofixation was ordered, but perhaps this wasn't necessary it no M spike was seen? All my other blood work with the rheumy came back normal, so no rheumatoid arthritis or autoimmune to explain these pains I'm having.
One thing that was abnormal in the SPEP was Beta, which was low (it was 0.54, range 0.74 - 1.06). Any idea what this means? I googled and all I found was poor nutrition! That's definitely not the case with me.
Something else that has concerned me is that independent blood work that I had done a month ago in April with an unrelated doctor, for my annual Hep C follow up, showed that under Bone Profile, my Globulin was marked as elevated (38 g/L). I read that this can be elevated in both liver disease and myeloma, so this coincidence slightly worried me. I looked back through past lab work for HCV and never had high Globulin before. Should I share this with the hematologist?
At any rate, I'll be seeing him soon for the remainder of tests (UPEP etc) and for the correct imaging of the areas where I have dull pain (now daily, but still intermittent - ribs, front and back, back, spine and shoulder blades, and also iliac hip bone and ankle bone).
The tech99 Bone Scan came back clear, except for two hot spots of increased tracer uptake in my two toes, which the rheumatologist wasn't worried about investigating further. I'll ask for the UPEP and free lite chain assay to rule non-secretory myeloma and scans of where I have pain. Am I missing anything else? Many thanks.
P.S. - I should add that he tested for cryoglobulinemia, and that was negative also.
P.P.S. - Does everyone with light chain myeloma have impaired kidneys, because my creatinine was normal. I assume this is what the UPEP would look for.
My SPEP is normal and says "no myeloma band detected" which I'm of course very relieved about. My rheumatologist didn't order a UPEP though, but agreed to refer me to a hematologist for this and the remainder of tests to rule multiple myeloma out. I also didn't see any indication that an Immunofixation was ordered, but perhaps this wasn't necessary it no M spike was seen? All my other blood work with the rheumy came back normal, so no rheumatoid arthritis or autoimmune to explain these pains I'm having.
One thing that was abnormal in the SPEP was Beta, which was low (it was 0.54, range 0.74 - 1.06). Any idea what this means? I googled and all I found was poor nutrition! That's definitely not the case with me.
Something else that has concerned me is that independent blood work that I had done a month ago in April with an unrelated doctor, for my annual Hep C follow up, showed that under Bone Profile, my Globulin was marked as elevated (38 g/L). I read that this can be elevated in both liver disease and myeloma, so this coincidence slightly worried me. I looked back through past lab work for HCV and never had high Globulin before. Should I share this with the hematologist?
At any rate, I'll be seeing him soon for the remainder of tests (UPEP etc) and for the correct imaging of the areas where I have dull pain (now daily, but still intermittent - ribs, front and back, back, spine and shoulder blades, and also iliac hip bone and ankle bone).
The tech99 Bone Scan came back clear, except for two hot spots of increased tracer uptake in my two toes, which the rheumatologist wasn't worried about investigating further. I'll ask for the UPEP and free lite chain assay to rule non-secretory myeloma and scans of where I have pain. Am I missing anything else? Many thanks.
P.S. - I should add that he tested for cryoglobulinemia, and that was negative also.
P.P.S. - Does everyone with light chain myeloma have impaired kidneys, because my creatinine was normal. I assume this is what the UPEP would look for.
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Sara
Re: Wondering if I have MGUS or smoldering myeloma
I saw the hematologist today and he said a UPEP wasn't necessary and that he would order a free light chain assay to complete the myeloma work up. I thought he would do a skeletal survey or a full-body scan of the different areas where I have pain, but instead asked me where I hurt the most - so I said in my upper back in the spine and shoulder blades.
He's ordering an MRI of my thoracic spine only, which won't cover the shoulder blades.
Am I right in understanding that if the MRI is clear and this final test (FLC) is negative like the SPEP and IFE, that I don't have to be concerned about MGUS / myeloma?
He's ordering an MRI of my thoracic spine only, which won't cover the shoulder blades.
Am I right in understanding that if the MRI is clear and this final test (FLC) is negative like the SPEP and IFE, that I don't have to be concerned about MGUS / myeloma?
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Sara
Re: Wondering if I have MGUS or smoldering myeloma
I wanted to share the results I finally got back - from what I can see I don't have MGUS or myeloma.
With the blood work done, the only thing I have yet to have is an MRI of my thoracic spine, which is where I still have intermittent pain. The hematologist didn't think a skeletal survey was needed as all my CBCs are normal.
I saw a neurologist for my burning foot and he doesn't think it's neurological - he thinks I should have a foot x-ray and that it could perhaps be a hairline fracture.
Two questions I have are:
1) With non-secretory myeloma (which I know is extremely rare), can one have it and have normal CBCs? My rheumatologist doesn't think my previous vitamin d insufficiency explains my ongoing bone pain, and says it's probably muscle, but I feel it's bone pain and now rheumatism intimately from years of having it. I'm negative for fibromyalgia, lupus, autoimmune, Cryo and rheumatoid arthritis. I have new areas of pain developing, along my shin bone and still in my ribs, hips, shoulder blades and back.
2) Can any of these results below give any information as to the risks or likelihood of my developing MGUS/myeloma in the future? In light of having lifelong chronic Hep C, it would be reassuring to know (if it can be determined).
Thanks for putting up with all my questions - I sincerely wish all of you here the very best of luck and good health:
Serum Immunofixation - no myeloma band detected
SPEP says myeloma band not detected:
Total Protein 7.2 (range 6.4 - 8.2 g/dL)
Albumin 4.41 (range 3.2 - 4.6 g/dL)
Alpha 1 0.17 (range 0.15 - 0.33 g/dL)
Alpha 2 0.75 (range 0.72 - 1.06 g/dL)
Beta low 0.54 (range 0.74 - 1.06 g/dL)
Gamma 1.32 (range 0.91 - 1.71 g/dL)
Free Light Chain Assay says "currently no indication of the formation of monoclonal Bence Jones Proteinaemia or the increase of polyclonal free light cans"
Free light chains type kappa 18.9 mg/l (range 3.3 - 19.4)
Free light chains type lambda 16.5 mg/l (range 5.7 - 26.3)
kappa/lambda (ratio?) 1.15 (range 0.26 - 1.65)
Immunoglobulins (IGA,IGG, IGM)
IgA 1.25 (0.70 - 4 g/L)
IgG 15.9 (7 - 16 g/L)
IgM 1.35 (0.40 - 2.30 g/L)
With the blood work done, the only thing I have yet to have is an MRI of my thoracic spine, which is where I still have intermittent pain. The hematologist didn't think a skeletal survey was needed as all my CBCs are normal.
I saw a neurologist for my burning foot and he doesn't think it's neurological - he thinks I should have a foot x-ray and that it could perhaps be a hairline fracture.
Two questions I have are:
1) With non-secretory myeloma (which I know is extremely rare), can one have it and have normal CBCs? My rheumatologist doesn't think my previous vitamin d insufficiency explains my ongoing bone pain, and says it's probably muscle, but I feel it's bone pain and now rheumatism intimately from years of having it. I'm negative for fibromyalgia, lupus, autoimmune, Cryo and rheumatoid arthritis. I have new areas of pain developing, along my shin bone and still in my ribs, hips, shoulder blades and back.
2) Can any of these results below give any information as to the risks or likelihood of my developing MGUS/myeloma in the future? In light of having lifelong chronic Hep C, it would be reassuring to know (if it can be determined).
Thanks for putting up with all my questions - I sincerely wish all of you here the very best of luck and good health:
Serum Immunofixation - no myeloma band detected
SPEP says myeloma band not detected:
Total Protein 7.2 (range 6.4 - 8.2 g/dL)
Albumin 4.41 (range 3.2 - 4.6 g/dL)
Alpha 1 0.17 (range 0.15 - 0.33 g/dL)
Alpha 2 0.75 (range 0.72 - 1.06 g/dL)
Beta low 0.54 (range 0.74 - 1.06 g/dL)
Gamma 1.32 (range 0.91 - 1.71 g/dL)
Free Light Chain Assay says "currently no indication of the formation of monoclonal Bence Jones Proteinaemia or the increase of polyclonal free light cans"
Free light chains type kappa 18.9 mg/l (range 3.3 - 19.4)
Free light chains type lambda 16.5 mg/l (range 5.7 - 26.3)
kappa/lambda (ratio?) 1.15 (range 0.26 - 1.65)
Immunoglobulins (IGA,IGG, IGM)
IgA 1.25 (0.70 - 4 g/L)
IgG 15.9 (7 - 16 g/L)
IgM 1.35 (0.40 - 2.30 g/L)
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Sara
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