Hi Y'all,
In 1998, when being evaluated for multiple sclerosis (MS), the doctors at the Houston Medical Center found this, but told me to just have it rechecked in a year or two:
IgG Serum 1530 H 696-1488 mg/dl
I was diagnosed with prodromal relapsing / remitting MS. Most of lab work was relatively normal until 2002 (we moved to south Florida, and I was at Cleveland Clinic for most of my healthcare), when things began to change a bit:
MPA Serum IgG 1270 717-1411
MPA Serum IgA 194 78-391
MPA Serum IgM 222 53-334
MPA Serum Kappa 1410 H 534-1267
MPA Serum Lambda 355 253-653
MPA Kappa / Lambda Ratio 3.97 H 1-3
A "faint band" was detectable, but only on the urine tests (not in the serum immunofixation or electrophoresis). My numbers stayed mostly stable in spite of the faint band only showing up every other test.
In 2007, still no M-spike detected, but they were still visualizing faint banding in one to two areas:
Protein Electrophoresis, CSF
Pre Albumin 3.5 2.2-6.1
Albumin, CSF 62.0 53.6-71.1
Alpha 1 Globulin, CSF 3.6 1.8-3.8
Alpha 2 Globulin, CSF 6.7 6.0-12.6
Beta Globulin, CSF 9.6 L 9.9-19.0
Gamma Globulin, CSF 14.6 H 4.8-8.8
Protein, CSF 40 15-45
Glucose, CSF 60 40-70
A hematologist / oncologist at Cleveland Clinic diagnosed me with MGUS at this time (2007). The next 3 years found no significant abnormal indications on immunofixation or electrophoresis, and I was told (by Cleveland Clinic) that I could wait 5 years for the next check-up / check-in with these MGUS tests. Then, this is how everything looked last month, on September 11, 2015:
Protein Electrophoresis, Serum
Protein, Total 7.9 6.1-8.1 g/dL
Albumin 4.7 3.8-4.8 g/dL
Alpha 1 Glob. 0.3 0.2-0.3 g/dL
Alpha 2 Glob. 0.7 0.5-0.9 g/dL
Beta 1 Glob. 0.4 0.4-0.6 g/dL
Beta 2 Glob. 0.5 0.2-0.5 g/dL
Gamma Glob. 1.3 0.8-1.7 g/dL
*Note: At least two or more faint bands in the gamma region.
**Note: Beta-2 globulins appear significantly increased relative to beta-1 globulins.
Kappa / Lambda Light Chains Total, Serum
Kappa 364 H 74-295 mg/dL
Lambda 114 32-156 mg/dL
K / L Ratio 3.2 H 1.3-2.7
Immunofixation, Serum
No monoclonal proteins detected
Immunoglobulin A 260 81-463 mg/dL
Immunoglobulin G 1227 694-1618 mg/dL
Immunoglubulin M 185 48-271 mg/dL
I don't even know how to compare these new results with the older ones. Different labs, different ranges. I do know that there seem to be more faint bands than before. This is the first time I remember seeing both Beta-1 & Beta-2 listed on an SEP, and I have no clue as to the significance of the "increased in relative to" comment. The K/L ratio is obviously High, but I don't know how High is Too High, in terms of how concerned to be.
I've left several messages for my primary care / internal medicine doc, and she sent a message through her nurse saying let's wait and run the tests again next year. I find this response confounding, especially since during our initial (and only) office visit, she told me she was not qualified to monitor my MGUS lab work *unless* it stayed stable; she said she'd refer me on to a hematologist oncologist if anything changed.
And yet, I cannot get into see a hematologist / oncologist. None of them will accept my copies of my own health records and lab tests, only former / formal records along with a referral from my primary care / internal medicine doctor (who has absolutely nothing by way of records on me save what I gave her, her initial physical exam, and this latest set of labs). I have good insurance - a PPO - but I cannot find a hematologist / oncologist who will take me on as a new patient.
I feel confused and frustrated and I don't even know what the next step is. If anybody is in a position to offer assistance/advice/guidance, I would be very grateful.
I'm currently dealing with the latest of many (MS-related) vision issues, new / worsening MS symptoms (especially balance & coordination), worsening hip (I have a slow-growing "lucent" - not lytic - lesion) and rib (ULQ) pain (that none of the doctors can find a cause of), and I've been seeing an endocrinologist (after a hospitalization where my autoimmune thyroid disease went crazy and almost sent me into a coma). The endo doc has not been able to stop the see-saw-ing of my TSH levels. I finally got the endo to order a cortisol test which came back as "critical low," but I cannot get his office to call me back (been over a week) with next steps or further info. I feel forever at the mercy of doctors and their nurses / front offices, and in pain and exhausted all the time.
Why is it that when I am called to upon to be the most ardent advocator of my healthcare, I am least capable of being such?
Anyway, thanks for any support, ideas, direction, etc. And thanks for being here. All good things, to all of you ~
Forums
10 posts
• Page 1 of 1
Re: Understanding lab results & how to see a hematologist?
Hi Moonspeak,
I'm sorry to hear about the confusion related to your lab results and, especially, your difficulty in getting an appointment with a hematologist.
I have a few comments that may help clear things up for you, at least when it comes to your lab results.
When it comes to MGUS and multiple myeloma, the results that particularly matter in terms of diagnosing the disease and tracking it are results of blood tests. So, although your CSF results are may be valuable when it comes to multiple sclerosis, it's really your
1. Serum protein electrophoresis (SPEP)
2. Serum immunofixation electrophoresis (IFE, or SIFE)
3. Serum free light chain (sFLC)
tests results that matter for MGUS and multiple myeloma.
You also could add to the above three tests your serum immunoglobulin levels (IgG, IgA, etc.) and other blood results such as creatinine levels, hemoglobin levels, and calcium levels. But the three tests I've listed above are really the key at this point.
The SPEP test will report your M-spike, if it can find one. It will be labeled either "M-spike", "M-protein," "Abnormal protein band", "Monoclonal protein", etc. In your case, it doesn't seem like the test is picking up a measurable M-spike, which is good news.
The other good news is that your serum immunofixation test, which checks to see whether or not monoclonal protein is present (but doesn't measure how much), also isn't picking up a monoclonal protein.
Based on those results alone, it doesn't look like you actually have MGUS.
HOWEVER, the thing that you are missing from any of your results is a set of serum FREE light chain results. You have have had your TOTAL serum light chains measured, but that isn't the same as your FREE light chains.
(Light chains can be bound up together with heavy chains to form complete immunoglobulin molecules, but they also can be floating around in the blood -- unattached and "free". It's the FREE light chain levels that really matter when it comes to MGUS and myeloma.)
The good news is that your regular physician can order a free light chain blood test for you rather easily. In fact, if need be, you can just go to a lab and order the test yourself.
So, if it were me, I would get a free light chain blood test done sometime in the near future. The test might reveal that you have a case of light-chain only MGUS.
Again, though, your most recent SPEP, immunofixation, and immunoglobulin levels aren't showing signs of MGUS, let alone myeloma. So that's a good sign for now.
Keep in mind that I'm not a doctor, and I also may have missed some details in reviewing your results. I'm sure, though, that if I've made any mistake in interpreting the results you've shared, someone else here will correct me (which is a good thing!).
Good luck!
I'm sorry to hear about the confusion related to your lab results and, especially, your difficulty in getting an appointment with a hematologist.
I have a few comments that may help clear things up for you, at least when it comes to your lab results.
When it comes to MGUS and multiple myeloma, the results that particularly matter in terms of diagnosing the disease and tracking it are results of blood tests. So, although your CSF results are may be valuable when it comes to multiple sclerosis, it's really your
1. Serum protein electrophoresis (SPEP)
2. Serum immunofixation electrophoresis (IFE, or SIFE)
3. Serum free light chain (sFLC)
tests results that matter for MGUS and multiple myeloma.
You also could add to the above three tests your serum immunoglobulin levels (IgG, IgA, etc.) and other blood results such as creatinine levels, hemoglobin levels, and calcium levels. But the three tests I've listed above are really the key at this point.
The SPEP test will report your M-spike, if it can find one. It will be labeled either "M-spike", "M-protein," "Abnormal protein band", "Monoclonal protein", etc. In your case, it doesn't seem like the test is picking up a measurable M-spike, which is good news.
The other good news is that your serum immunofixation test, which checks to see whether or not monoclonal protein is present (but doesn't measure how much), also isn't picking up a monoclonal protein.
Based on those results alone, it doesn't look like you actually have MGUS.
HOWEVER, the thing that you are missing from any of your results is a set of serum FREE light chain results. You have have had your TOTAL serum light chains measured, but that isn't the same as your FREE light chains.
(Light chains can be bound up together with heavy chains to form complete immunoglobulin molecules, but they also can be floating around in the blood -- unattached and "free". It's the FREE light chain levels that really matter when it comes to MGUS and myeloma.)
The good news is that your regular physician can order a free light chain blood test for you rather easily. In fact, if need be, you can just go to a lab and order the test yourself.
So, if it were me, I would get a free light chain blood test done sometime in the near future. The test might reveal that you have a case of light-chain only MGUS.
Again, though, your most recent SPEP, immunofixation, and immunoglobulin levels aren't showing signs of MGUS, let alone myeloma. So that's a good sign for now.
Keep in mind that I'm not a doctor, and I also may have missed some details in reviewing your results. I'm sure, though, that if I've made any mistake in interpreting the results you've shared, someone else here will correct me (which is a good thing!).
Good luck!
-
JimNY
Re: Understanding lab results & how to see a hematologist?
Hi JimNY,
Thanks very much for your helpful response. I didn't know that CSF results are not considered in the monitoring of MGUS. Since I have MS, my healthcare practitioners always report the CSF results to me along with the serum & urinalysis results.
As for why I was diagnosed with MGUS, all I can tell you is that I had a variety of clinical symptoms & findings, along with serum & urine markers that caused my healthcare team at Cleveland Clinic to make that call. When you've got an entire team of specialists coordinating your healthcare, and all of them agree that you have MGUS, it seems reasonable to accept their diagnosis/conclusion. When I went to the Memorial healthcare system for a 2nd opinion regarding possible/recommended immunotherapy treatment - to mitigate all of the MS-related eye issues - the healthcare team at Memorial also concurred with the MGUS diagnosis & emphasized my need for follow up.
In point of fact, it was my MGUS status that caused the Memorial healthcare team to strongly advise *against* having the immunotherapy that Cleveland Clinic recommended, for fear of "triggering" my MGUS & activating it, pushing it, to an advanced state of Smoldering or full-on Myeloma.
As for the frustrations with my physician & her staff, I've finally gotten an accurate message directly to my doctor, and she has responded (via patient portal) to me. She basically chastised me for using an outside lab (which she had already agreed to on my initial/only other visit - because she concurred that keeping lab tests from various doctors at a single lab is the wise choice). She also told me she was not a hematologist, she's an internal medicine doctor (which, I obviously know; regardless, she'd agreed to order the standard follow-up MGUS labs at my yearly check-up with the proviso that if the results were markedly different from the prior year, I would be referred to a hematologist to monitor me). The doctor, in her message, told me that my "needs" were not within her realm of expertise & therefore we were "not a good fit," and she basically fired me as a patient (without any kind of referral or recommendation for a hematologist).
I cannot begin to tell you how thrown I feel. At my office visit, she agreed to follow my MGUS; she agreed to order the standard series of tests I have each time to monitor my MGUS; when less than half of the tests I usually have were ordered, I called & left messages via the patient portal to communicate that the other tests were still needed - especially in light of the change in my K/L ratio; suddenly I've got her staff telling me "that's what happens when you use a lab that's not ours," and I've got the doctor firing me - from any & all kind of care, it would seem, including being my primary care/internal medicine doctor.
:::overwhelmed:::
But again, thank you for your response & the information you provided. If nothing else, I feel less alone in all that's going on.
Best regards ~
Thanks very much for your helpful response. I didn't know that CSF results are not considered in the monitoring of MGUS. Since I have MS, my healthcare practitioners always report the CSF results to me along with the serum & urinalysis results.
As for why I was diagnosed with MGUS, all I can tell you is that I had a variety of clinical symptoms & findings, along with serum & urine markers that caused my healthcare team at Cleveland Clinic to make that call. When you've got an entire team of specialists coordinating your healthcare, and all of them agree that you have MGUS, it seems reasonable to accept their diagnosis/conclusion. When I went to the Memorial healthcare system for a 2nd opinion regarding possible/recommended immunotherapy treatment - to mitigate all of the MS-related eye issues - the healthcare team at Memorial also concurred with the MGUS diagnosis & emphasized my need for follow up.
In point of fact, it was my MGUS status that caused the Memorial healthcare team to strongly advise *against* having the immunotherapy that Cleveland Clinic recommended, for fear of "triggering" my MGUS & activating it, pushing it, to an advanced state of Smoldering or full-on Myeloma.
As for the frustrations with my physician & her staff, I've finally gotten an accurate message directly to my doctor, and she has responded (via patient portal) to me. She basically chastised me for using an outside lab (which she had already agreed to on my initial/only other visit - because she concurred that keeping lab tests from various doctors at a single lab is the wise choice). She also told me she was not a hematologist, she's an internal medicine doctor (which, I obviously know; regardless, she'd agreed to order the standard follow-up MGUS labs at my yearly check-up with the proviso that if the results were markedly different from the prior year, I would be referred to a hematologist to monitor me). The doctor, in her message, told me that my "needs" were not within her realm of expertise & therefore we were "not a good fit," and she basically fired me as a patient (without any kind of referral or recommendation for a hematologist).
I cannot begin to tell you how thrown I feel. At my office visit, she agreed to follow my MGUS; she agreed to order the standard series of tests I have each time to monitor my MGUS; when less than half of the tests I usually have were ordered, I called & left messages via the patient portal to communicate that the other tests were still needed - especially in light of the change in my K/L ratio; suddenly I've got her staff telling me "that's what happens when you use a lab that's not ours," and I've got the doctor firing me - from any & all kind of care, it would seem, including being my primary care/internal medicine doctor.
:::overwhelmed:::
But again, thank you for your response & the information you provided. If nothing else, I feel less alone in all that's going on.
Best regards ~
-
Moonspeak - Name: Moonspeak
- When were you/they diagnosed?: 2002
- Age at diagnosis: 38
Re: Understanding lab results & how to see a hematologist?
Moonspeak,
If you are in Houston, why not go to MD Anderson? They are one of the top multiple myeloma treatment institutions in the world.
If you are in Houston, why not go to MD Anderson? They are one of the top multiple myeloma treatment institutions in the world.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Understanding lab results & how to see a hematologist?
Hi, Mulitbilly,
That is exactly where I'm trying to get in to see someone, however the intake consulting person told me that the MD Anderson protocol requires I be "referred" to them by my/a physician, regardless of the fact that my BCBC of treatment PPO does not require me to have a doctor's referral. When I explained this & asked more questions, the intake consultant at MD Anderson told me that while an insurance-based referral is not necessary, I must have a physician's "recommendation/referral" to warrant consideration as a patient at MD Anderson.
The doctor who basically fired me - for reason/s I still do not fully understand - says she cannot make such a recommendation/referral because she's only seen me once, and that, regardless, she does not consider herself qualified to make a call regarding hematological/MGUS status.
I tried using my former primary care doctor to refer me to MD Anderson, but since that doctor had recommended - based on my MGUS stability the past few years - to go to doing the full routine of tests every other year, I cannot use that doctor. MD Anderson requires referral by a doctor who's treated me within the last year.
Again, I feel blocked at every turn. And the change (increase) in my K/L ratio concern is one of many, right now. My cortisol level is .7 (normal range is 4-22), my autoimmune thyroid is swinging between extremely hypo & hyper, I'm having blurry/double vision in my right eye, my balance/coordination & fatigue are worsening, I have horrible headaches (new symptom, that began with these most recent counts of blurriness in my eye & shooting pain directly behind that eye, but the shooting pain behind the eye only happens when I bend over - go figure, if there is some weird presentation of symptomology, I'll be sure to manifest it) & the chronic pain in my right hip & left lower rib cage is escalating (I'm told I have lucent, not lytic, lesions in these places; though they cannot rule out that those lesions will become lytic or "punched out" on future imaging). I have trouble keeping cool outside in the heat/humidity, and then when I'm inside I need a sweatshirt or blankets even when it's 78 degrees inside my home (bouts of shivering that have my teeth shattering, sometimes have to immerse myself in hot bath to stop the shivering). My insomnia has me feeling like the walking dead, and the night sweats are no picnic, either.
I apologize if I sound as if I'm being a drama queen or feeling sorry for myself; I realize there are many with conditions/illnesses/symptoms far worse than mine, I just feel like I'm falling apart, and I know I have to be clear-thinking & strong & focused to best care for and advocate for myself.... but I seem to be losing the ability to lead the charge to getting answers/help/accurate diagnoses/treatment. My specialist each deal with what's their "area of concern," but finding someone to oversee my whole body - me, as a whole person - that is the challenge.
I do appreciate your response & suggestion. Thanks for trying to help.
That is exactly where I'm trying to get in to see someone, however the intake consulting person told me that the MD Anderson protocol requires I be "referred" to them by my/a physician, regardless of the fact that my BCBC of treatment PPO does not require me to have a doctor's referral. When I explained this & asked more questions, the intake consultant at MD Anderson told me that while an insurance-based referral is not necessary, I must have a physician's "recommendation/referral" to warrant consideration as a patient at MD Anderson.
The doctor who basically fired me - for reason/s I still do not fully understand - says she cannot make such a recommendation/referral because she's only seen me once, and that, regardless, she does not consider herself qualified to make a call regarding hematological/MGUS status.
I tried using my former primary care doctor to refer me to MD Anderson, but since that doctor had recommended - based on my MGUS stability the past few years - to go to doing the full routine of tests every other year, I cannot use that doctor. MD Anderson requires referral by a doctor who's treated me within the last year.
Again, I feel blocked at every turn. And the change (increase) in my K/L ratio concern is one of many, right now. My cortisol level is .7 (normal range is 4-22), my autoimmune thyroid is swinging between extremely hypo & hyper, I'm having blurry/double vision in my right eye, my balance/coordination & fatigue are worsening, I have horrible headaches (new symptom, that began with these most recent counts of blurriness in my eye & shooting pain directly behind that eye, but the shooting pain behind the eye only happens when I bend over - go figure, if there is some weird presentation of symptomology, I'll be sure to manifest it) & the chronic pain in my right hip & left lower rib cage is escalating (I'm told I have lucent, not lytic, lesions in these places; though they cannot rule out that those lesions will become lytic or "punched out" on future imaging). I have trouble keeping cool outside in the heat/humidity, and then when I'm inside I need a sweatshirt or blankets even when it's 78 degrees inside my home (bouts of shivering that have my teeth shattering, sometimes have to immerse myself in hot bath to stop the shivering). My insomnia has me feeling like the walking dead, and the night sweats are no picnic, either.
I apologize if I sound as if I'm being a drama queen or feeling sorry for myself; I realize there are many with conditions/illnesses/symptoms far worse than mine, I just feel like I'm falling apart, and I know I have to be clear-thinking & strong & focused to best care for and advocate for myself.... but I seem to be losing the ability to lead the charge to getting answers/help/accurate diagnoses/treatment. My specialist each deal with what's their "area of concern," but finding someone to oversee my whole body - me, as a whole person - that is the challenge.
I do appreciate your response & suggestion. Thanks for trying to help.
-
Moonspeak - Name: Moonspeak
- When were you/they diagnosed?: 2002
- Age at diagnosis: 38
Re: Understanding lab results & how to see a hematologist?
I did some digging, and in answer to the MGUS diagnosis query, I found notes from my initial diagnosis at Cleveland Clinic regarding hyperdiploidy, genetic markers, polymorphisms, deletions, etc. that put me at greater risk for developing multiple myeloma, and also genetic indicators of progression due to some kind of polymorphisms/deletions that suppress my ability to fight off the bad cell production (making successful treatment & remission more complication).
I hope those notes make more sense to some of you than they do to me. I suppose I have a lot more homework to do in regard to these genetic findings & DNA/chromosome influences on likelihood of progression to multiple myeloma, the suppression of the "good kind" of cells & the inability to suppress the "bad kind" of cells.
If I'm understanding correctly, this information was gained through a combination of FC, FISH (on the bone marrow tissue, I believe?), and also thorough genetic sequencing/testing via serum.
I hope those notes make more sense to some of you than they do to me. I suppose I have a lot more homework to do in regard to these genetic findings & DNA/chromosome influences on likelihood of progression to multiple myeloma, the suppression of the "good kind" of cells & the inability to suppress the "bad kind" of cells.
If I'm understanding correctly, this information was gained through a combination of FC, FISH (on the bone marrow tissue, I believe?), and also thorough genetic sequencing/testing via serum.
-
Moonspeak - Name: Moonspeak
- When were you/they diagnosed?: 2002
- Age at diagnosis: 38
Re: Understanding lab results & how to see a hematologist?
Moonspeak,
Regarding your runaround at MD Anderson, I might suggest talking to the supervisor of the person that is blocking you (or try calling back at a different time of day and see if you can get somebody else to work with). I too have "self referral" insurance and I've never been blocked at any multiple myeloma institution and I've been able to self-refer myself in all cases.
How frustrating and downright aggravating this must be for you.
Regarding your runaround at MD Anderson, I might suggest talking to the supervisor of the person that is blocking you (or try calling back at a different time of day and see if you can get somebody else to work with). I too have "self referral" insurance and I've never been blocked at any multiple myeloma institution and I've been able to self-refer myself in all cases.
How frustrating and downright aggravating this must be for you.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Understanding lab results & how to see a hematologist?
Hi Moonspeak,
I'm sorry to hear about all the problems you've had with your internal medicine specialist and with getting in to see a myeloma specialist at MD Anderson. I agree with Multibilly that it certainly would be best to be seen by one of the doctors there.
I'm not a doctor, so I can't say what the "standard" way of diagnosing and monitoring MGUS is in someone with multiple sclerosis. What I do know is that, in the most cases, MGUS is diagnosed and tracked via the tests that I described above -- SPEP, SIFE, and sFLC.
You probably had all of these tests done at some point, perhaps at the beginning when your IgG was elevated, and perhaps clear signs of a monoclonal protein (M-spike) were present at that time. It also sounds like you've had a bone marrow biopsy done at some point, along with (FISH?) testing for different chromosomal abnormalities using the marrow sample.
Still, based on your most recent SPEP and SIFE, you have at most faint signs of a monoclonal protein. This is reflected in the fact that your key immunoglobulin levels are now all within the normal ranges. Yes, your total light chain ratio is outside the normal range, but you really need to know your what's going on with your FREE light chain ratio.
To be diagnosed with MGUS, you have to have either an M-spike (monoclonal protein) that is positive but less than 3.0 g/dL, or an abnormal free light chain ratio. In addition, the clonal (abnormal) plasma cell percentage in the bone marrow has to be less than 10 percent, and there cannot be signs that the disease is causing anemia, above-normal calcium levels in the blood, bone damage, or kidney damage as reflected in above-normal serum creatinine levels.
If you meet the above criteria, but don't have an M-spike, then you would be considered to have light chain MGUS.
There is a discussion of light-chain MGUS and the commonly accepted risk factors for progression from any form of MGUS to multiple myeloma in this forum thread:
https://myelomabeacon.org/forum/light-chain-mgus-risk-of-progression-t4751.html
Currently, the commonly accepted risk factors do not include any specific chromosomal abnormalities, although certain abnormalities are accepted as affecting the risk of progression from smoldering multiple myeloma to multiple myeloma requiring treatment. See this forum thread for more on that topic:
https://myelomabeacon.org/forum/smoldering-multiple-myeloma-review-article-t5559.html
(Smoldering multiple myeloma is a condition you can think of as lying between MGUS and multiple myeloma that requires treatment.)
I know that this is a lot to absorb, but hopefully it gives you some perspective, and it will give you an idea of how you want to proceed.
Good luck!
I'm sorry to hear about all the problems you've had with your internal medicine specialist and with getting in to see a myeloma specialist at MD Anderson. I agree with Multibilly that it certainly would be best to be seen by one of the doctors there.
I'm not a doctor, so I can't say what the "standard" way of diagnosing and monitoring MGUS is in someone with multiple sclerosis. What I do know is that, in the most cases, MGUS is diagnosed and tracked via the tests that I described above -- SPEP, SIFE, and sFLC.
You probably had all of these tests done at some point, perhaps at the beginning when your IgG was elevated, and perhaps clear signs of a monoclonal protein (M-spike) were present at that time. It also sounds like you've had a bone marrow biopsy done at some point, along with (FISH?) testing for different chromosomal abnormalities using the marrow sample.
Still, based on your most recent SPEP and SIFE, you have at most faint signs of a monoclonal protein. This is reflected in the fact that your key immunoglobulin levels are now all within the normal ranges. Yes, your total light chain ratio is outside the normal range, but you really need to know your what's going on with your FREE light chain ratio.
To be diagnosed with MGUS, you have to have either an M-spike (monoclonal protein) that is positive but less than 3.0 g/dL, or an abnormal free light chain ratio. In addition, the clonal (abnormal) plasma cell percentage in the bone marrow has to be less than 10 percent, and there cannot be signs that the disease is causing anemia, above-normal calcium levels in the blood, bone damage, or kidney damage as reflected in above-normal serum creatinine levels.
If you meet the above criteria, but don't have an M-spike, then you would be considered to have light chain MGUS.
There is a discussion of light-chain MGUS and the commonly accepted risk factors for progression from any form of MGUS to multiple myeloma in this forum thread:
https://myelomabeacon.org/forum/light-chain-mgus-risk-of-progression-t4751.html
Currently, the commonly accepted risk factors do not include any specific chromosomal abnormalities, although certain abnormalities are accepted as affecting the risk of progression from smoldering multiple myeloma to multiple myeloma requiring treatment. See this forum thread for more on that topic:
https://myelomabeacon.org/forum/smoldering-multiple-myeloma-review-article-t5559.html
(Smoldering multiple myeloma is a condition you can think of as lying between MGUS and multiple myeloma that requires treatment.)
I know that this is a lot to absorb, but hopefully it gives you some perspective, and it will give you an idea of how you want to proceed.
Good luck!
-
JimNY
Re: Understanding lab results & how to see a hematologist?
Hi, again,
I just want to thank everybody for responding with info/advice & most of all, sympathy/empathy for the frustrations I often experience with various aspects of dealing with the healthcare community.
My new neurologist, with whom I already have a great working relationship (after only 3 visits), has offered to personally handle the set-up of my initial appointment/evaluation at MD Anderson. I'm relieved to be moving forward, hopefully, toward some answers.
My latest MRIs (which are 3.0 Tesla, as opposed to the .5 - 1.5 Tesla I've had previously) show significant changes in all three parts of my spine. In the endocrinology area, my kidney & liver (serum levels) are now edging decidedly toward measurable, though mild, disfunction. I'm already scheduled for a couple more MRIs/Scans, and I've had a serum FLC & 24-hr urinalysis (waiting on results).
Given the increase in my allergy-related asthma symptoms & other wonky hypersensitivities (medications/food/environment), I will also be evaluated for something called mastocytosis (& its close "relatives"). I'm told that one can have both MGUS/SMM/multiple myeloma & mastocytosis. So, the next few weeks (months?) should provide an interesting assortment of tests. Yay
P
I just want to thank everybody for responding with info/advice & most of all, sympathy/empathy for the frustrations I often experience with various aspects of dealing with the healthcare community.
My new neurologist, with whom I already have a great working relationship (after only 3 visits), has offered to personally handle the set-up of my initial appointment/evaluation at MD Anderson. I'm relieved to be moving forward, hopefully, toward some answers.
My latest MRIs (which are 3.0 Tesla, as opposed to the .5 - 1.5 Tesla I've had previously) show significant changes in all three parts of my spine. In the endocrinology area, my kidney & liver (serum levels) are now edging decidedly toward measurable, though mild, disfunction. I'm already scheduled for a couple more MRIs/Scans, and I've had a serum FLC & 24-hr urinalysis (waiting on results).
Given the increase in my allergy-related asthma symptoms & other wonky hypersensitivities (medications/food/environment), I will also be evaluated for something called mastocytosis (& its close "relatives"). I'm told that one can have both MGUS/SMM/multiple myeloma & mastocytosis. So, the next few weeks (months?) should provide an interesting assortment of tests. Yay
P-
Moonspeak - Name: Moonspeak
- When were you/they diagnosed?: 2002
- Age at diagnosis: 38
Re: Understanding lab results & how to see a hematologist?
Okay, so please bear with me if I'm asking what may seem like an "overly naive" question. As I've described above, I've had a relatively stable course of MGUS until this year's check-up tests. On September 11th my serum protein electrophoresis test - in regard to the total kappa / lambda light chains - looked like this:
Kappa 364 H (74-295 mg/dL)
Lambda 114 (34-156 mg/dL)
Kappa/Lambda Ratio 3.2 H (1.3-2.7)
Then, on October 15, I had a serum free light chains test with these results:
Kappa Light Chain, Free, Serum 12.7 (3.3-19.4 mg/L)
Lambda Light Chain, Free, Serum 3.7 L (5.7-26.3 mg/L)
Kappa/Lambda Chains Free w/ Ratio 3.43 H (0.26-1.65)
So my question is, did the light chain with the abnormal value switch from kappa to lambda? Or does the serum FLC measure inversely?
I'm so confused…
Thank you!
Kappa 364 H (74-295 mg/dL)
Lambda 114 (34-156 mg/dL)
Kappa/Lambda Ratio 3.2 H (1.3-2.7)
Then, on October 15, I had a serum free light chains test with these results:
Kappa Light Chain, Free, Serum 12.7 (3.3-19.4 mg/L)
Lambda Light Chain, Free, Serum 3.7 L (5.7-26.3 mg/L)
Kappa/Lambda Chains Free w/ Ratio 3.43 H (0.26-1.65)
So my question is, did the light chain with the abnormal value switch from kappa to lambda? Or does the serum FLC measure inversely?
I'm so confused…
Thank you!
-
Moonspeak - Name: Moonspeak
- When were you/they diagnosed?: 2002
- Age at diagnosis: 38
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