I just received the results of my free light chain assay, and the kappa level is slightly out of range at 20.1. The lambda level is 18.4, and the ratio is 1.09.
A previous protein electrophoresis revealed the presence of a protein monoclonal band at a level of 0.8, and this was subsequently identified as located in the gamma region. Immunofixation detected the presence of an IgM lambda monoclonal protein.
I am slightly anemic and have had troublesome pain in my pelvis and inguinal region for some months, along with a history of lumbar spine issues (which may be attributable to my twin addictions of tennis and running).
My GP has referred me to a hematologist / oncologist, but the appointment is not until late October. I realize, of course, that I may be harboring MGUS, but I am nonetheless concerned about a more ominous diagnosis. Ought I to be canvassing for a referral that is in the more immediate future?
Many thanks, in advance, for whatever advice you can toss my way.
With appreciation, Barney606
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Re: Should I arrange an earlier specialist appointment?
Hi Barney,
Welcome to the forum.
Your kappa-lambda free light chain ratio is in the normal range, and the ratio is really what you want to focus on when determining the degree to which a plasma cell disorder is present. See the table in this post for an explanation of what the different combination of free light chain test results can mean.
What are the units for your M-spike? Are they g/l or g/dl? If the units are g/l, then an M-spike of 0.8 g/l (or 0.08 g/dl) is really low.
Have you had any tests done to see whether or not you may have amyloidosis?
Welcome to the forum.
Your kappa-lambda free light chain ratio is in the normal range, and the ratio is really what you want to focus on when determining the degree to which a plasma cell disorder is present. See the table in this post for an explanation of what the different combination of free light chain test results can mean.
What are the units for your M-spike? Are they g/l or g/dl? If the units are g/l, then an M-spike of 0.8 g/l (or 0.08 g/dl) is really low.
Have you had any tests done to see whether or not you may have amyloidosis?
Re: Should I arrange an earlier specialist appointment?
Hi Barney.
I see you are in Vancouver. I'm in San Francisco, so commenters from Canada may be more useful than I am.
When my husband had an abnormal M-spike here, I pushed for a quick hematologist referral which led to a same-day bone marrow biopsy and bone survey, then a CT-PET scan a week later (when the bone scan was abnormal). and then his diagnosis once the biopsy came back. Your tests are much lower than his were, and MGUS is certainly in the possible outcomes as are other more benign conditions ... but a specialist will help you sort all that.
I'm an internist and I didn't feel a wait was in his interest and I also wouldn't let my patients (most of whom have government insurance here) wait months in your situation. I know that getting to the specialist earlier will take work on your part, but it is worth it if you get peace of mind and time to educate yourself and plan. Just the fact that you feel you need an earlier referral in the face of real uncertainty is a reason in my opinion to get one.
If you cannot get an earlier appointment, perhaps you can get your GP to start the testing that might help your specialist? Tests such as a beta-2 microglobulin, albumin, a sed rate, iron studies, and other tests to work up other causes of anemia, and X-rays of your back and hips or a bone/skeletal survey.
IgM multiple myeloma is rare and needs to be separated from another condition, Waldenstrom's macroglobulinemia, if it turns out to be something serious.
I wish you the best and hope this helps.
rick
I see you are in Vancouver. I'm in San Francisco, so commenters from Canada may be more useful than I am.
When my husband had an abnormal M-spike here, I pushed for a quick hematologist referral which led to a same-day bone marrow biopsy and bone survey, then a CT-PET scan a week later (when the bone scan was abnormal). and then his diagnosis once the biopsy came back. Your tests are much lower than his were, and MGUS is certainly in the possible outcomes as are other more benign conditions ... but a specialist will help you sort all that.
I'm an internist and I didn't feel a wait was in his interest and I also wouldn't let my patients (most of whom have government insurance here) wait months in your situation. I know that getting to the specialist earlier will take work on your part, but it is worth it if you get peace of mind and time to educate yourself and plan. Just the fact that you feel you need an earlier referral in the face of real uncertainty is a reason in my opinion to get one.
If you cannot get an earlier appointment, perhaps you can get your GP to start the testing that might help your specialist? Tests such as a beta-2 microglobulin, albumin, a sed rate, iron studies, and other tests to work up other causes of anemia, and X-rays of your back and hips or a bone/skeletal survey.
IgM multiple myeloma is rare and needs to be separated from another condition, Waldenstrom's macroglobulinemia, if it turns out to be something serious.
I wish you the best and hope this helps.
rick
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rick - Name: rick
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: nov 2015
- Age at diagnosis: 50
Re: Should I arrange an earlier specialist appointment?
Hi Barney
I am in Ontario. So I understand what the healthcare system is like in Canada!
Your M-spike is likely in g/l as Canadian labs report slightly different than our friends in the U.S.
So an M spike of 0.8 g/l (0.08 g/dl), while still a cause for concern, is still considered very low. Whatever is happening in your blood, it seems like you have caught it very early.
Your wait is a few months. I think you will be ok. But I like the idea that Rick suggested of having your family doctor order some of the regular tests doctors use for evaluating and staging plasma cell disorders. It seems like you have had most of the bloodwork, but your doctor can order a skeletal survey of your back and pelvis which can be done fast (at my hospital it is a same day test) and maybe a spine MRI and bone density test. PET scans are not really done in Canada for myeloma. CT is done for specific symptoms, not as an overall screening.
Has your doctor investigated the anemia? Determined the type?
You can try calling the hematologist's office and asking to be put on the cancellation list. Or what my parents do is show up in person and ask for a different appointment, since these specialists never seem to return your call!
I am in Ontario. So I understand what the healthcare system is like in Canada!
Your M-spike is likely in g/l as Canadian labs report slightly different than our friends in the U.S.
So an M spike of 0.8 g/l (0.08 g/dl), while still a cause for concern, is still considered very low. Whatever is happening in your blood, it seems like you have caught it very early.
Your wait is a few months. I think you will be ok. But I like the idea that Rick suggested of having your family doctor order some of the regular tests doctors use for evaluating and staging plasma cell disorders. It seems like you have had most of the bloodwork, but your doctor can order a skeletal survey of your back and pelvis which can be done fast (at my hospital it is a same day test) and maybe a spine MRI and bone density test. PET scans are not really done in Canada for myeloma. CT is done for specific symptoms, not as an overall screening.
Has your doctor investigated the anemia? Determined the type?
You can try calling the hematologist's office and asking to be put on the cancellation list. Or what my parents do is show up in person and ask for a different appointment, since these specialists never seem to return your call!
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Should I arrange an earlier specialist appointment?
Barney,
I'm with Rick on this one as far as seeing an expert sooner rather than later. Regardless of the size of your M-spike, the fact that you have an IgM M-spike (as opposed to an IgG or IgA M-spike) changes things. IgM multiple myeloma is indeed very rare and other IgM-related conditions such as Waldenstrom's macroglobulinemia should be ruled out by an expert.
I'm with Rick on this one as far as seeing an expert sooner rather than later. Regardless of the size of your M-spike, the fact that you have an IgM M-spike (as opposed to an IgG or IgA M-spike) changes things. IgM multiple myeloma is indeed very rare and other IgM-related conditions such as Waldenstrom's macroglobulinemia should be ruled out by an expert.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Should I arrange an earlier specialist appointment?
Apparently I'm in the minority here, but if the M-spike really is 0.8 g/l (0.08 g/dl), that's such a tiny M-spike that it – and the immunofixation result – could be something transient related, for example, to an infection. The fact that the kappa-lambda ratio is not out of range, despite the elevated kappa free light chain level, suggests that something polyclonal (e.g., infection-related) may be going on.
Moreover, even if there is monoclonal IgM, there's a high likelihood that the eventual diagnosis will be Waldenstrom's, which is a very slow-moving disease.
If the M-spike is 0.8 g/dl, then I would change my view on things. But if it's 0.8 g/l, then I'm not seeing the need for drastic measures to get an earlier specialist appointment.
I do think Rick's suggestion to line up some additional tests in advance is a good one. And, of course, earlier specialists appointments are always better than later ones. All health systems, however, have to prioritize the use of their resources so they can be used in a cost-effective way.
Moreover, even if there is monoclonal IgM, there's a high likelihood that the eventual diagnosis will be Waldenstrom's, which is a very slow-moving disease.
If the M-spike is 0.8 g/dl, then I would change my view on things. But if it's 0.8 g/l, then I'm not seeing the need for drastic measures to get an earlier specialist appointment.
I do think Rick's suggestion to line up some additional tests in advance is a good one. And, of course, earlier specialists appointments are always better than later ones. All health systems, however, have to prioritize the use of their resources so they can be used in a cost-effective way.
Re: Should I arrange an earlier specialist appointment?
Many, many thanks for the sage advice and guidance. I already have begun a polite but persistent effort to engage the hematologist / oncologist assigned to me, and I reckon that I will be talking with my GP next week. Back issues and attendant peripheral neuropathy, which appeared and then subsided some time ago, as well as more localized and ongoing pelvic / inguinal pain, seem most worrisome to me, given my test results.
By the way, my M-spike is indeed 0.8 g/L.
In any case, I can't begin to tell all of you how much I appreciate your counsel and support. I will let you know what develops in the weeks and months ahead.
Kindest regards, barney606
By the way, my M-spike is indeed 0.8 g/L.
In any case, I can't begin to tell all of you how much I appreciate your counsel and support. I will let you know what develops in the weeks and months ahead.
Kindest regards, barney606
Re: Should I arrange an earlier specialist appointment?
lys2012 wrote:
Sort of yes, sort of no. It depends on the province. Despite a PET scan being hard to get in Ontario for myeloma, my dad's haematologist got him one. On the other hand, Quebec uses PET scans far more often. Other provinces are somewhere in between the two.
PET scans are not really done in Canada for myeloma. CT is done for specific symptoms, not as an overall screening.
Sort of yes, sort of no. It depends on the province. Despite a PET scan being hard to get in Ontario for myeloma, my dad's haematologist got him one. On the other hand, Quebec uses PET scans far more often. Other provinces are somewhere in between the two.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
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