Hi, I hope someone can help me here.
I am a 40 year old white female and I have just recently been referred to a hematologist because of lymphadenopathy in neck, chest, abdomen, retroperitoneum ... basically throughout my body. I also have been feeling very bad for quite sometime and have progressively gotten worse over the last 6 months.
The hematologist has run lots of tests to try and determine a diagnosis, as I have been sent around from doctor to doctor for over a year now because of low-grade fever, elevated WBC, ESR, CRP, with no diagnosis.
I am going to list the abnormal labs. My concern is my doctor is on medical leave until the end of May now, and his nurse insists I need to wait for him to return instead of seeing another doctor in his practice. But, because of the abnormal results, I would like to get some input on if I should insist on seeing another doctor or if it will be okay to wait another 4 weeks for him to go over my lab results.
WBC 13.7 (H)
Absolute Neutrophils 9.30 (H)
Absolute Lymphocytes 3.60 (H)
Chloride 100 (L)
Albumin [Multiple]
Ferritin 11 (L)
Haptoglobin (276)
Free Kappa Light Chains 25.66 (H)
Free Lamba Light Chains 20.42 Normal
Kappa/Lambda Ratio 1.26 Normal
Urine protein 3+
Urine blood Heme: lg
I am still waiting for the M-spike, serum and quantitative M-spike as well as the PE interpretation serum. These labs were drawn over 2 weeks ago. Is this normal for it to take so long for the M-spike results?
If I did not feel so horrible, I would wait without question, but because of how horrible I feel and these abnormal labs I am concerned about waiting another 4 weeks for answers.
Any input would be greatly appreciated!!
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Re: Elevated kappa free light chains
Spayne,
First off, we aren't docs on this forum. You really need one to accurately comment on this.
Your kappa is only moderately elevated. This "could" be a sign of an early, benign stage of multiple myeloma like MGUS, etc, but it very well may not be. It is really impossible to tell with just this data since your kappa is only modestly elevated.
Do your other tests indicate a high calcium level or a low hemaglobin level? These conditions can sometimes occur in patients with some stage of multiple myeloma and might provide another clue.
I'm not qualified to comment on your other elevated figures and whether they suggest some other underlying condition.
In any case, I might suggest:
1. Wait a couple more days for your other tests to come in and be persistent in asking for them. See what those labs tell you. I normally get my results back in 2-3 days, and that is with them being sent out of state.
2. If (and this is a big "if") you have an M-Spike from your serum protein electrophoresis test, you are really going to want to seek out a multiple myeloma specialist (I'm guessing that your doc that is on vacation is not one?). Or, do you need a referral from your current doc to go see another specialist?
3. A hematologist that specializes in multiple myeloma might also be able to help you even if you don't have MGUS, especially if you haven't been able to get a diagnosis yet.
Even if I wasn't feeling lousy, I think I would find another hematologist rather than wait and wonder what is going on for another month (a week or two is one thing, but a month is quite a long time to be stuck in limbo wondering what's going on). If I was feeling lousy, I would definitely find another hematologist, whether it be in the current practice you are using, or a different one. Who needs to continue feeling lousy just because one's doc takes a vacation?
Anyway, that's my two cents ...
First off, we aren't docs on this forum. You really need one to accurately comment on this.
Your kappa is only moderately elevated. This "could" be a sign of an early, benign stage of multiple myeloma like MGUS, etc, but it very well may not be. It is really impossible to tell with just this data since your kappa is only modestly elevated.
Do your other tests indicate a high calcium level or a low hemaglobin level? These conditions can sometimes occur in patients with some stage of multiple myeloma and might provide another clue.
I'm not qualified to comment on your other elevated figures and whether they suggest some other underlying condition.
In any case, I might suggest:
1. Wait a couple more days for your other tests to come in and be persistent in asking for them. See what those labs tell you. I normally get my results back in 2-3 days, and that is with them being sent out of state.
2. If (and this is a big "if") you have an M-Spike from your serum protein electrophoresis test, you are really going to want to seek out a multiple myeloma specialist (I'm guessing that your doc that is on vacation is not one?). Or, do you need a referral from your current doc to go see another specialist?
3. A hematologist that specializes in multiple myeloma might also be able to help you even if you don't have MGUS, especially if you haven't been able to get a diagnosis yet.
Even if I wasn't feeling lousy, I think I would find another hematologist rather than wait and wonder what is going on for another month (a week or two is one thing, but a month is quite a long time to be stuck in limbo wondering what's going on). If I was feeling lousy, I would definitely find another hematologist, whether it be in the current practice you are using, or a different one. Who needs to continue feeling lousy just because one's doc takes a vacation?
Anyway, that's my two cents ...
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Elevated kappa free light chains
Thank you Multibilly for your response!
I guess I already knew the answer, but I didn't want to feel like I was being unrealistic by not waiting for this doctor to return.
My hemoglobin is within normal limits but my ferritin is low at 11. I was told this is related to anemia, which is basically what hemoglobin is right? I was told the reason the m spike was taking so long to get results was because they do something called reflex testing, where they perform the test, then send it out to another lab for them to run the test as well. It has been over 2 weeks now and the results are not in yet ... no news is good news? No, really it concerns me that it is taking so long.
I think I may just see another hematologist in the same practice so they can see what tests have already been done and see how to proceed. So you can have high kappa light chains and not have multiple myeloma or the benign forms?
Sorry to ask so many questions. I am just so frustrated with the healthcare I have received so far and no one seems to have any urgency in helping me feel better. I am 40 years old and basically I am no longer living. I am just surviving because I don't even feel like doing basic things such as housework, dinner outings,
Thanks again for your response!! Hope you have a great weekend!!
I guess I already knew the answer, but I didn't want to feel like I was being unrealistic by not waiting for this doctor to return.
My hemoglobin is within normal limits but my ferritin is low at 11. I was told this is related to anemia, which is basically what hemoglobin is right? I was told the reason the m spike was taking so long to get results was because they do something called reflex testing, where they perform the test, then send it out to another lab for them to run the test as well. It has been over 2 weeks now and the results are not in yet ... no news is good news? No, really it concerns me that it is taking so long.
I think I may just see another hematologist in the same practice so they can see what tests have already been done and see how to proceed. So you can have high kappa light chains and not have multiple myeloma or the benign forms?
Sorry to ask so many questions. I am just so frustrated with the healthcare I have received so far and no one seems to have any urgency in helping me feel better. I am 40 years old and basically I am no longer living. I am just surviving because I don't even feel like doing basic things such as housework, dinner outings,
Thanks again for your response!! Hope you have a great weekend!!
Re: Elevated kappa free light chains
We are very sorry to hear about the way you are feeling.
First, the very slight elevation in your kappa light chain is just out of the normal range. Further, the kappa to lambda ratio remains normal. Again, with the caveat that we are awaiting the rest of labs, these are results that are NOT consistent with multiple myeloma or a plasma cell disorder. Also, the finding of diffuse lymphadenopathy (LAD) is very unlikely to be myeloma. Within the plasma cell disorder spectrum are overlap discorders lymphoplasmcytic lymphoma (LPL) and Waldenstroms macroglobulinema (a specific type of LPL). Depending on the size of the LAD, another etiology appears more likely. There are a number of lymphomas that present this way -- especially with your B symptoms (fatigue, fevers, chills...) .
Second, SPEP and UPEP with IFE take a few days to resolve because of the test itself - a frustrating aspect of this test for patients and physicians.
- Do NOT assume no news is good news. Always be your own advocate. Your doctor's nurse should be able to give the results if you do not have access to them yourself - they are your lab results -
Third, I know that you want to know now, but I would try to be patient with your MD (easier to say than to do). It may take a bit more time to figure out what is going on. Has he/she spoken to you about biopsies (bone marrow and lymph node)? These are the most appropriate (only) way to get you an appropriate diagnosis -- to actually "see" the tumor cells.
Your care is in your hands. You must feel comfortable with your physician.
First, the very slight elevation in your kappa light chain is just out of the normal range. Further, the kappa to lambda ratio remains normal. Again, with the caveat that we are awaiting the rest of labs, these are results that are NOT consistent with multiple myeloma or a plasma cell disorder. Also, the finding of diffuse lymphadenopathy (LAD) is very unlikely to be myeloma. Within the plasma cell disorder spectrum are overlap discorders lymphoplasmcytic lymphoma (LPL) and Waldenstroms macroglobulinema (a specific type of LPL). Depending on the size of the LAD, another etiology appears more likely. There are a number of lymphomas that present this way -- especially with your B symptoms (fatigue, fevers, chills...) .
Second, SPEP and UPEP with IFE take a few days to resolve because of the test itself - a frustrating aspect of this test for patients and physicians.
- Do NOT assume no news is good news. Always be your own advocate. Your doctor's nurse should be able to give the results if you do not have access to them yourself - they are your lab results -
Third, I know that you want to know now, but I would try to be patient with your MD (easier to say than to do). It may take a bit more time to figure out what is going on. Has he/she spoken to you about biopsies (bone marrow and lymph node)? These are the most appropriate (only) way to get you an appropriate diagnosis -- to actually "see" the tumor cells.
Your care is in your hands. You must feel comfortable with your physician.
-
Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: Elevated kappa free light chains
Thank you Dr. Shain for taking the time to respond to my post. I have been through so many tests, including a lymph node biopsy of a 2 cm left axillary node that was done back in Oct 2013, which came back as reactive and showed an elevated CD4:CD8 ratio and some polyclonal CD19, CD10+ cells. Also removed at the same time was what they thought to be a lipoma from my left rib area, but attached to that was another enlarged node. The surgeon said it appeared to be fatty necrosis.
I have had 2 PET scans which show minimal uptake in adenoidal region, axillary node and endometrium thought to be all okay. Both PET scans note no significant lymphadenopathy, but the CT scans done in between show increase in number of nodes and enlargement up to 14mm in portacaval, retroperitoneal areas, and large number of slightly enlarged occipital, neck level V which the report states is slightly atypical for reactive nodes.
The doctors are all baffled and had been going down the rheumatological avenue, but I believe they have pretty much ruled all of that out and also any infectious diseases. Strange thing is, all my pain mainly persists on my left side, and now that I am seeing a hematologist my esr and crp levels are normal for the first time in over a year. One doctor explained he couldn't understand why my ferritin was so low and haptoglobin high with other signs that I had inflammation. They call me a mystery.
I just hope someone can figure it out soon because I honestly feel as if in the last 6 months I have progressed in a bad way and that scares me, especially the waiting. I feel like each day I seem to get worse.
I am thinking bone marrow biopsy is the next step but, with the doctor being out until the end of May, I was thinking about seeing another doctor in his practice. Maybe he could go ahead and at least get that out of the way instead of waiting another 4 weeks plus, I am sure, 2 more for the biopsy to be performed and results returned.
I hate to sound so frustrated, but it feels as if I may be diagnosed through an autopsy and I really hope that isn't the case. But, at this point I am surviving not really living
Thanks again for your input I really appreciate you taking the time to give me information.
Sincerely,
Sonya
I have had 2 PET scans which show minimal uptake in adenoidal region, axillary node and endometrium thought to be all okay. Both PET scans note no significant lymphadenopathy, but the CT scans done in between show increase in number of nodes and enlargement up to 14mm in portacaval, retroperitoneal areas, and large number of slightly enlarged occipital, neck level V which the report states is slightly atypical for reactive nodes.
The doctors are all baffled and had been going down the rheumatological avenue, but I believe they have pretty much ruled all of that out and also any infectious diseases. Strange thing is, all my pain mainly persists on my left side, and now that I am seeing a hematologist my esr and crp levels are normal for the first time in over a year. One doctor explained he couldn't understand why my ferritin was so low and haptoglobin high with other signs that I had inflammation. They call me a mystery.
I just hope someone can figure it out soon because I honestly feel as if in the last 6 months I have progressed in a bad way and that scares me, especially the waiting. I feel like each day I seem to get worse.
I am thinking bone marrow biopsy is the next step but, with the doctor being out until the end of May, I was thinking about seeing another doctor in his practice. Maybe he could go ahead and at least get that out of the way instead of waiting another 4 weeks plus, I am sure, 2 more for the biopsy to be performed and results returned.
I hate to sound so frustrated, but it feels as if I may be diagnosed through an autopsy and I really hope that isn't the case. But, at this point I am surviving not really living
Thanks again for your input I really appreciate you taking the time to give me information.
Sincerely,
Sonya
Re: Elevated kappa free light chains
With elevated white counts, neutrophils and lymphocytes, it sounds like your body is reacting to some kind of infection or virus. This is a wild one, but have you ever been tested for West Nile Virus?
Ron H
Ron H
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Elevated kappa free light chains
Hi Ron thanks for your response. I have been seen by an infectious disease doctor that supposedly ran tests for any possible infectious diseases, including TB, Lyme, HIV, hepatitis and many more. I even told him about our travel, as we cruise yearly to the Caribbean, and he assured me he checked me for everything and assured me that I do not have any infectious disease.
I do not recall seeing West Nile mentioned in any of the testing. Do you know what the actual test would be called or what exactly they are checking for, so I could look over all his notes and lab values?
I do not recall seeing West Nile mentioned in any of the testing. Do you know what the actual test would be called or what exactly they are checking for, so I could look over all his notes and lab values?
Re: Elevated kappa free light chains
I do know they can test for it, but am not sure what the test is.
Here is a link from the CDC. West Nile has been an issue in the Dallas area and can linger for a long period of time. West Nile is a virus and therefore does not respond to antibiotics. You probably were tested for it as you had been checked out by an infectious disease doctor.
http://www.cdc.gov/westnile/index.html
I hope they can figure out what is causing your problems.
Ron
Here is a link from the CDC. West Nile has been an issue in the Dallas area and can linger for a long period of time. West Nile is a virus and therefore does not respond to antibiotics. You probably were tested for it as you had been checked out by an infectious disease doctor.
http://www.cdc.gov/westnile/index.html
I hope they can figure out what is causing your problems.
Ron
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
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