Good morning everyone,
I was hoping to get some feedback regarding multiple myeloma and some of your experiences when you were getting diagnosed. My mom, 63, has hypercalcemia, horrible back pain, and most recently they found something is replacing the bone marrow in her lower lumbar. This was found thru a recent MRI. She has been referred to an oncologist.
My question is, has anyone else been diagnosed with multiple myeloma without any protein in the blood? That test came back normal, twice.
-Heather
Forums
6 posts
• Page 1 of 1
Re: Multiple myeloma without protein in the blood?
Hi Heather,
To help determine whether your mother is suffering from multiple myeloma, her doctors should be running the following tests, which are easy to do and not very expensive:
Serum Protein Electrophoresis (SPEP)
This shows her total protein level, albumin, alpha/beta/gamma globulins, and also an estimate of the monoclonal protein in her blood, if it can be detected. This is the "M-spike" (paraprotein, abnormal protein band) you often hear about when it comes to myeloma.
Serum Immunofixation Electrophoresis (sIFE, or IFE)
This tests to see whether she has any monoclonal protein in her blood, and what type (if it's detected), but not how much.
Serum Free Light Chain Assay (sFLC, or FLC)
This measures the kappa and lambda free light chains in the blood. These levels will be reported, as well as the kappa/lambda ratio.
Between 15 and 20 percent of newly diagnosed multiple myeloma patients do not have any "M-protein" (monoclonal protein) show up on their SPEP.
About half of the newly diagnosed myeloma patients who do not have an M-spike on their SPEP test, however, do have a monoclonal protein show up their IFE test.
To put it another way, about 7 percent of newly diagnosed myeloma patients do not have a monoclonal protein show up on either their SPEP or IFE tests.
About half those 7 percent -- about 3 percent -- are truly "nonsecretory", which means you can't find ANY sign of a monoclonal protein in the blood using either the SPEP, IFE, or FLC tests.
So it does happen, but it is rare.
Your mother probably will need to have a bone marrow biopsy at some point to check if there are myeloma cells in her bones, and she should have all the blood tests I described done, if she hasn't had them done already.
I hope the tests find that your mother has something relatively benign, rather than multiple myeloma. In any case, keep us posted, and let us know if you have more questions.
To help determine whether your mother is suffering from multiple myeloma, her doctors should be running the following tests, which are easy to do and not very expensive:
Serum Protein Electrophoresis (SPEP)
This shows her total protein level, albumin, alpha/beta/gamma globulins, and also an estimate of the monoclonal protein in her blood, if it can be detected. This is the "M-spike" (paraprotein, abnormal protein band) you often hear about when it comes to myeloma.
Serum Immunofixation Electrophoresis (sIFE, or IFE)
This tests to see whether she has any monoclonal protein in her blood, and what type (if it's detected), but not how much.
Serum Free Light Chain Assay (sFLC, or FLC)
This measures the kappa and lambda free light chains in the blood. These levels will be reported, as well as the kappa/lambda ratio.
Between 15 and 20 percent of newly diagnosed multiple myeloma patients do not have any "M-protein" (monoclonal protein) show up on their SPEP.
About half of the newly diagnosed myeloma patients who do not have an M-spike on their SPEP test, however, do have a monoclonal protein show up their IFE test.
To put it another way, about 7 percent of newly diagnosed myeloma patients do not have a monoclonal protein show up on either their SPEP or IFE tests.
About half those 7 percent -- about 3 percent -- are truly "nonsecretory", which means you can't find ANY sign of a monoclonal protein in the blood using either the SPEP, IFE, or FLC tests.
So it does happen, but it is rare.
Your mother probably will need to have a bone marrow biopsy at some point to check if there are myeloma cells in her bones, and she should have all the blood tests I described done, if she hasn't had them done already.
I hope the tests find that your mother has something relatively benign, rather than multiple myeloma. In any case, keep us posted, and let us know if you have more questions.
Last edited by TerryH on Thu Nov 05, 2015 11:38 am, edited 1 time in total.
Re: Multiple myeloma without protein in the blood?
Hello Jeannie:
Here is the quick answer. No M-spike, but active multiple myeloma, is called nonsecretory. It is relatively rare for newly diagnosed, but definitely possible. Another possibility, a little more common, but still on the rare side for newly diagnosed, is light chain multiple myeloma.
I believe that the bone marrow biopsy (BMB) will clear that up in most cases. Rarer still is a BMB that comes up clean, but still there are multiple myeloma issues.
Sorry to hear of your Mom's problems. Whatever it is, I hope they can diagnose it and get it taken care of. Good luck.
Here is the quick answer. No M-spike, but active multiple myeloma, is called nonsecretory. It is relatively rare for newly diagnosed, but definitely possible. Another possibility, a little more common, but still on the rare side for newly diagnosed, is light chain multiple myeloma.
I believe that the bone marrow biopsy (BMB) will clear that up in most cases. Rarer still is a BMB that comes up clean, but still there are multiple myeloma issues.
Sorry to hear of your Mom's problems. Whatever it is, I hope they can diagnose it and get it taken care of. Good luck.
-
JPC - Name: JPC
Re: Multiple myeloma without protein in the blood?
Hi Heather,
Yes, I believe my routine blood tests were normal, too.
I have light chain multiple myeloma (kappa type) and it was discovered only because of high protein in the urine test. I had no symptoms of any kind till that routine urine test about a year ago. The usual blood tests were normal till the special blood test specifically designed for kappa and lambda chains was ordered. I had no "M Spike", as I understand it. All the excess protein (kappa light chains) was leaking through the kidneys into the urine and fortunately I did not sustain any kidney damage. My personal physician ordered this blood test after checking my creatinine and bilirubin, etc. and referred me to my oncologist immediately after finding the kappa free light chains to be 850+ (normal range below about 19.4).
I hope this helps. I think this blood test is a lot less painful than the bone marrow biopsy (BMB). However, the oncologist would likely order it IF the kappa or lambda numbers are out of range.
K_Shash
Yes, I believe my routine blood tests were normal, too.
I have light chain multiple myeloma (kappa type) and it was discovered only because of high protein in the urine test. I had no symptoms of any kind till that routine urine test about a year ago. The usual blood tests were normal till the special blood test specifically designed for kappa and lambda chains was ordered. I had no "M Spike", as I understand it. All the excess protein (kappa light chains) was leaking through the kidneys into the urine and fortunately I did not sustain any kidney damage. My personal physician ordered this blood test after checking my creatinine and bilirubin, etc. and referred me to my oncologist immediately after finding the kappa free light chains to be 850+ (normal range below about 19.4).
I hope this helps. I think this blood test is a lot less painful than the bone marrow biopsy (BMB). However, the oncologist would likely order it IF the kappa or lambda numbers are out of range.
K_Shash
-
K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Multiple myeloma without protein in the blood?
Search for the term "nonsecretory" and read my story. I was plenty messed up with fractures, near fractures, and a plasmacytoma tumor, yet nothing unusual in my blood.
-
Mister Dana - Name: Mister Dana
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 66
Re: Multiple myeloma without protein in the blood?
Jeannie, has your mom been diagnosed with multiple myeloma or have the doctors mentioned they are investigating whether it is multiple myeloma?
With my father, the doctors were not ready to make the call between multiple myeloma, or a related illness called solitary bone plasmacytoma, until after his surgery, skeletal x-ray survey, and a 24-hour urine test.
Has an orthopaedic surgeon had a look at your mom's xrays / MRI of her spine?
With my father, the doctors were not ready to make the call between multiple myeloma, or a related illness called solitary bone plasmacytoma, until after his surgery, skeletal x-ray survey, and a 24-hour urine test.
Has an orthopaedic surgeon had a look at your mom's xrays / MRI of her spine?
-
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
6 posts
• Page 1 of 1