Good morning,
I have some questions. I recently went to see a hematologist and my kappa was at 1820. He said I had blood cancer, but now it now has dropped to 375 and my lambda is 194.
My skeleton x ray says I have mild to minimal spondylosis. My retic immature fr is 0.017, which is low.
What does this mean? My wbc is low at 3.9.
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6 posts
• Page 1 of 1
Re: Blood cancer diagnosis, but lab results have changed
Hi Questions,
It's really hard to comment based on just this information. Did your doctor only tell you that you have "blood cancer' and nothing more (what kind of blood cancer)?
You might want to read through this welcome post by the Beacon Staff in the thread below to get a better idea of just what sorts of things you need to communicate in order for us to be able to better comment on all this.
https://myelomabeacon.org/forum/post23841.html#p23841
(I cut and pasted the relevant sections below).
"Here are a couple of things you probably should do now to educate yourself better about myeloma.
First, you should understand the difference between smoldering myeloma, or asymptomatic myeloma (as it increasingly is being called), and multiple myeloma (symptomatic myeloma) and an earlier stage of myeloma known as MGUS. The section of the Wikipedia article on myeloma that covers the diagnostic criteria for the disease gives a somewhat technical, but still readable, overview of the differences between the three diagnoses:
http://en.wikipedia.org/wiki/Multiple_myeloma#Diagnostic_criteria
Second, you will need to get familiar with the different laboratory tests and imaging methods that will be used to track your disease. Key results that you'll be using to track your disease are likely to be your paraprotein level (M-spike, in U.S. parlance), your free light chain levels, and also your immunoglobulin levels. Calcium, hemoglobin, platelet, creatinine, and perhaps BUN levels from blood tests will also be useful to see if you're showing any signs of the myeloma affecting your organs. Your plasma cell percentage from bone marrow biopsies is also a key variable to know about.
Whether you track these numbers in something like a spreadsheet is up to you. Some people do, some don't. Most people find it useful to at least keep all their results in a single binder or set of files.
If you report any of your test results here, please include units (and reference / normal ranges), as different units are used in different countries and, sometimes, even by different laboratories.
Third, you should find out what type of myeloma you have, in terms of the "involved" immunoglobulin (IgG, IgA, etc.) and the involved light chain (kappa or lambda). This will be good to know when looking at your immunoglobulin test results and your free light chain results.
Fourth, you should find out whether testing already has been done to determine what, if any, chromosomal abnormalities your myeloma cells have. This test would have been done using a sample from your bone marrow biopsy. Also, have you had an MRI done to see if you have any "focal lesions" in your skeleton? The presence of focal lesions and certain chromosomal abnormalities can indicate a higher likelihood of progression to symptomatic disease, although nothing is ever guaranteed.
(You almost certainly had an x-ray skeletal survey, since it is relatively standard when determining whether a myeloma patient has symptomatic or asymptomatic disease. X-rays tell you more about the outer, hard surface of the bone, while MRIs will tell you more about what's going on in the bone marrow.)
This brings us to our final point, which is to understand that every myeloma patient is different. Myeloma specialists often divide patients into different "risk" categories. In smoldering myeloma, there are various ways to do this based, as we just mentioned, on lab results and imaging results. But that's just the tip of the iceberg, in that it just starts to capture how different the disease can be from one patient to another.
This is one reason why you often will hear from people here in the forum that it's important to be seen by, or be under the care of, a myeloma specialist. We suspect that's already true in your case, given the way things are organized in the UK (and the fact that you're in London). But it's important shouldn't be overlooked, because a a myeloma specialist will know better what to look for when it comes to your disease, and probably help you learn more about it as well.....
We're certain that many of the other forum participants will have additional advice and support for you. We're also sure we probably missed an important piece of advice (or two or three!). We hope, however, that this posting serves as a good starting point for you."
It's really hard to comment based on just this information. Did your doctor only tell you that you have "blood cancer' and nothing more (what kind of blood cancer)?
You might want to read through this welcome post by the Beacon Staff in the thread below to get a better idea of just what sorts of things you need to communicate in order for us to be able to better comment on all this.
https://myelomabeacon.org/forum/post23841.html#p23841
(I cut and pasted the relevant sections below).
"Here are a couple of things you probably should do now to educate yourself better about myeloma.
First, you should understand the difference between smoldering myeloma, or asymptomatic myeloma (as it increasingly is being called), and multiple myeloma (symptomatic myeloma) and an earlier stage of myeloma known as MGUS. The section of the Wikipedia article on myeloma that covers the diagnostic criteria for the disease gives a somewhat technical, but still readable, overview of the differences between the three diagnoses:
http://en.wikipedia.org/wiki/Multiple_myeloma#Diagnostic_criteria
Second, you will need to get familiar with the different laboratory tests and imaging methods that will be used to track your disease. Key results that you'll be using to track your disease are likely to be your paraprotein level (M-spike, in U.S. parlance), your free light chain levels, and also your immunoglobulin levels. Calcium, hemoglobin, platelet, creatinine, and perhaps BUN levels from blood tests will also be useful to see if you're showing any signs of the myeloma affecting your organs. Your plasma cell percentage from bone marrow biopsies is also a key variable to know about.
Whether you track these numbers in something like a spreadsheet is up to you. Some people do, some don't. Most people find it useful to at least keep all their results in a single binder or set of files.
If you report any of your test results here, please include units (and reference / normal ranges), as different units are used in different countries and, sometimes, even by different laboratories.
Third, you should find out what type of myeloma you have, in terms of the "involved" immunoglobulin (IgG, IgA, etc.) and the involved light chain (kappa or lambda). This will be good to know when looking at your immunoglobulin test results and your free light chain results.
Fourth, you should find out whether testing already has been done to determine what, if any, chromosomal abnormalities your myeloma cells have. This test would have been done using a sample from your bone marrow biopsy. Also, have you had an MRI done to see if you have any "focal lesions" in your skeleton? The presence of focal lesions and certain chromosomal abnormalities can indicate a higher likelihood of progression to symptomatic disease, although nothing is ever guaranteed.
(You almost certainly had an x-ray skeletal survey, since it is relatively standard when determining whether a myeloma patient has symptomatic or asymptomatic disease. X-rays tell you more about the outer, hard surface of the bone, while MRIs will tell you more about what's going on in the bone marrow.)
This brings us to our final point, which is to understand that every myeloma patient is different. Myeloma specialists often divide patients into different "risk" categories. In smoldering myeloma, there are various ways to do this based, as we just mentioned, on lab results and imaging results. But that's just the tip of the iceberg, in that it just starts to capture how different the disease can be from one patient to another.
This is one reason why you often will hear from people here in the forum that it's important to be seen by, or be under the care of, a myeloma specialist. We suspect that's already true in your case, given the way things are organized in the UK (and the fact that you're in London). But it's important shouldn't be overlooked, because a a myeloma specialist will know better what to look for when it comes to your disease, and probably help you learn more about it as well.....
We're certain that many of the other forum participants will have additional advice and support for you. We're also sure we probably missed an important piece of advice (or two or three!). We hope, however, that this posting serves as a good starting point for you."
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Blood cancer diagnosis, but lab results have changed
Hello All,
Ok, I will try hard to explain. I was feeling very sick for the past year now and have been handed off from one specialist to another. My neurologist ran a bunch of blood tests and I got a blood result back for kappa .
Kappa 74-295 mg/dl 1820 High
Albumin 3.5-4.7 g/dl 4.8 High
Total protein 6.1-8.1 g/dl 8.2 HIgh
WBC 4.0-11.0 k/ul 3.9 High
retic, immature Fr 0.030-0.159 0.017 Low
My oncologist told me I had blood cancer (myeloma), but that it made no sence because I was other wise pretty healthy. I feel like crap. I'm weak, tired and my eating habits are changing. I'm not as hungry as I used to be and I'm having a hard time eating.
Then a week later I have different readings
Kappa 74-295 mg/dl 357 High
Lambda 32-156 mg/dl 194 High
Now my doctor is saying I don't have cancer, but my body is producing too many antibodies and that's why my kappa lambda level is still elevated. I see a GI doctor next week because my deamidated giladin level is high.
Giladan 7.0 u/ml 35.1 High
I know this is confusing because I'm very confused.
A.franco
Ok, I will try hard to explain. I was feeling very sick for the past year now and have been handed off from one specialist to another. My neurologist ran a bunch of blood tests and I got a blood result back for kappa .
Kappa 74-295 mg/dl 1820 High
Albumin 3.5-4.7 g/dl 4.8 High
Total protein 6.1-8.1 g/dl 8.2 HIgh
WBC 4.0-11.0 k/ul 3.9 High
retic, immature Fr 0.030-0.159 0.017 Low
My oncologist told me I had blood cancer (myeloma), but that it made no sence because I was other wise pretty healthy. I feel like crap. I'm weak, tired and my eating habits are changing. I'm not as hungry as I used to be and I'm having a hard time eating.
Then a week later I have different readings
Kappa 74-295 mg/dl 357 High
Lambda 32-156 mg/dl 194 High
Now my doctor is saying I don't have cancer, but my body is producing too many antibodies and that's why my kappa lambda level is still elevated. I see a GI doctor next week because my deamidated giladin level is high.
Giladan 7.0 u/ml 35.1 High
I know this is confusing because I'm very confused.
A.franco
Re: Blood cancer diagnosis, but lab results have changed
Hey There A. Franco,
I don't want to try and second guess your doc and I'm not a doc myself. That was a really huge drop in your kappa from 1820 mg/dL to 357 mg/dL in just one week. I'm not a doc, but I don't think you would expect to see that kind of a really big change in the kappa if you had multiple myeloma. I'm going to guess that it is instead due to some sort of inflammatory condition or autoimmune disease.
Note that a high deamidated giladin level can suggest celiac disease (which is a an inflammatory disease). That might be your culprit? Again, just a guess from a layman. Good thing to talk about with the GI doc next week.
I don't want to try and second guess your doc and I'm not a doc myself. That was a really huge drop in your kappa from 1820 mg/dL to 357 mg/dL in just one week. I'm not a doc, but I don't think you would expect to see that kind of a really big change in the kappa if you had multiple myeloma. I'm going to guess that it is instead due to some sort of inflammatory condition or autoimmune disease.
Note that a high deamidated giladin level can suggest celiac disease (which is a an inflammatory disease). That might be your culprit? Again, just a guess from a layman. Good thing to talk about with the GI doc next week.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Blood cancer diagnosis, but lab results have changed
Multibilly,
Thank you for taking the time to answer back. I'm so confused and so sick of feeling this way. Does kappa lambda just mean I'm producing too many antibodies? Why is it still high?
How is it possible for it to go from 1820 to 357? On my initial test it didn't say anything about lambda. On the new one it say's 194 for lambda and it's flagged high.
My doctor said that she is very confused also. My oncologist just told me it's not cancer and gave me referrals to other doctors.
A.Franco
Thank you for taking the time to answer back. I'm so confused and so sick of feeling this way. Does kappa lambda just mean I'm producing too many antibodies? Why is it still high?
How is it possible for it to go from 1820 to 357? On my initial test it didn't say anything about lambda. On the new one it say's 194 for lambda and it's flagged high.
My doctor said that she is very confused also. My oncologist just told me it's not cancer and gave me referrals to other doctors.
A.Franco
Re: Blood cancer diagnosis, but lab results have changed
Celiac disease is an autoimmune disease that is aggravated by gluten in your diet. Your diet probably varies and you could have simply been eating something with a lot of gluten (or some other trigger) that caused a big inflammatory response in your body and this generated more antibodies and your first big free light chain spike. Free light chains are simply a part of an antibody known as an immunoglobulin.
Maybe you just haven't been eating as much gluten (or some other trigger) in the past few days before you got re-tested ... but enough to still aggravate your system and keep your free light chain value somewhat elevated.
I would try to eliminate some of the disease possibilities with your GI doc next week and take it from there (it would be better than trying to sort this out yourself on a forum). But maybe you might want to avoid foods with gluten and perhaps dairy over the next few days as well? You can find a lot of info on the web about celiac disease and gluten-free foods.
Again, these are all just guesses on my part and I'm no doc.
Maybe you just haven't been eating as much gluten (or some other trigger) in the past few days before you got re-tested ... but enough to still aggravate your system and keep your free light chain value somewhat elevated.
I would try to eliminate some of the disease possibilities with your GI doc next week and take it from there (it would be better than trying to sort this out yourself on a forum). But maybe you might want to avoid foods with gluten and perhaps dairy over the next few days as well? You can find a lot of info on the web about celiac disease and gluten-free foods.
Again, these are all just guesses on my part and I'm no doc.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
6 posts
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