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Questions and discussion to help forum members determine if they may have multiple myeloma, smoldering multiple myeloma, or MGUS.

Elevated free light chains, anemia & skull lesions.

by TracyBeckChandler on Wed Dec 27, 2017 11:53 pm

Back on November 1st, my doctor confirmed severe anemia and unbeknownst to me ordered a free light chain assay. The results were significantly elevated light chains. He referred me to a hematologist-oncologist and at my first visit he ordered infusions for the anemia and a skeletal survey but completely dismissed my concerns of multiple myeloma.

When the skeletal survey was read, it showed two lesions in my skull.

Now, I have a bone marrow biopsy scheduled for January 3, but the doctor is still saying he is "ruling out multiple myeloma".

Am I missing something here? Doesn't it seem more likely that I do have multiple myeloma, or is he just trying not to worry me?

TracyBeckChandler

Re: Elevated free light chains, anemia & skull lesions.

by Multibilly on Thu Dec 28, 2017 7:45 am

Hi TracyBeckChandler,

Sorry to hear about your situation.

Do you have copies of your lab results? In particular, do you know what your serum free light chain values are (including the units of measure and reference ranges)? Also (and most im­por­tantly), did the doctor order a serum immuno­fixation test and did that reveal the presence of any mono­clonal pro­tein? If a serum immuno­fixation test was ordered, the doctor probably also ordered a serum electro­phoresis test that would measure the value of any "M-spike" (mono­clonal immuno­globulin) in your blood. It would also be good to go back and look at your compre­hensive metabolic panel results and get your cal­cium and creatinine levels. Knowing all of these lab results will better enable folks on this forum to help you.

Note that all lab reports are legally your property and you can request copies of them from your doctor's office.

It's hard to guess what the doctor may be thinking without knowing more about your lab results. But from your symptoms and what you've described here, it does sound like there is a pre­limi­nary case to be made for sus­pecting some sort of plasma cell dyscrasia, unless no mono­clonal protein was detected in your blood.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Elevated free light chains, anemia & skull lesions.

by WholeNotherWorld on Thu Dec 28, 2017 11:01 am

I think the confusion is in the interpretation of the medical-speak term "ruling out". It's a bit like medical double speak. The term rule out is commonly used in outpatient care to eliminate a suspected condition or disease. So, it sounds like your doctor is suspicious of multiple myeloma and is ordering tests with that potential diagnosis in mind.

WholeNotherWorld
Who do you know with myeloma?: my husband
When were you/they diagnosed?: Dec. 2016
Age at diagnosis: 67

Re: Elevated free light chains, anemia & skull lesions.

by TracyBeckChandler on Thu Dec 28, 2017 2:51 pm

I called my primary doctor to ask for the actual lab results. They are out of the office until January 2nd. I left a message with the records department and I'm waiting for a call back.

I'm not sure if it's noteworthy, but two infusions of iron have corrected the anemia for now. I've also been sick with one infection after another for the last 3 months. I've done two rounds of steroids for breathing issues and also antibiotics. I have had extreme fatigue that I attributed to the anemia, which has been somewhat relieved. My blood pressure has also been very low since the start of this ordeal.

Again, none of that may be notable in regards to multiple myeloma, but all of these issues have been debilitating and I'm looking forward to getting some answers and clarity soon.

TracyBeckChandler

Re: Elevated free light chains, anemia & skull lesions.

by TracyBeckChandler on Thu Dec 28, 2017 11:15 pm

Free Kappa Lt Chains, serum 51.0 mg/L 3.3 - 19.4 mg/L
Free Lambda Lt Chains, serum 28.4 mg/L 5.7 - 26.3 mg/L
Kappa/Lambda ratio, serum 1.80 0.26 - 1.65


Impression: Lucencies overlying the frontal and parietal temporal bones of the bony calvarium for which lytic lesions as can occur with multiple myeloma cannot be excluded.

Narrative: Metastatic bone survey Dec 4, 2017

Clinical History: Abnormal free light chains. Fatigue and dyspnea on exertion.

Albumin 3.1 g/dL 2.9 - 4.4 g/dL
Alpha-1-globulin 0.3 g/dL 0.0 - 0.4 g/dL
Alpha-2 globulin 0.8 g/dL 0.4 - 1.0 g/dL
Beta globulin 1.2 g/dL 0.7 - 1.3 g/dL
Gamma globulin 1.9 g/dL 0.4 - 1.8 g/dL

M-spike Not Observed Not Observed

Globulin, total 4.1 g/dL 2.2 - 3.9 g/dL
A/G ratio 0.8 0.7 - 1.7


Protein electrophoresis scan will follow via computer, mail, or courier delivery.

Interpretation: The SPE pattern reflects a polyclonal increase in gamma globulin due to numerous clones of plasma cells producing hetero­geneous anti­body in response to some form of anti­genic stimulus. Hyper­gamma­globu­linemia is found in a wide variety of infectious, non-infectious, and auto­immune disease states. Evidence of mono­clonal protein is not apparent.

TracyBeckChandler

Re: Elevated free light chains, anemia & skull lesions.

by Multibilly on Fri Dec 29, 2017 7:15 am

Hi TracyBeckChandler,

From a multiple myeloma perspective, these results are all good news. With myeloma, you expect only one of your free light chain values to be high. When both the kappa and lambda values run high (like yours), that is more suggestive of an infection or an autoimmune disease. And no M-spike was observed, also good news. Furthermore, it looks like the increase in your protein level was poly­clonal (non-cancerous) in nature. It's good that your doctor is also doing a bone marrow biopsy to be completely sure that some sort of plasma cell disorder isn't in play.

As far as the potential lesions on your skull go, you may want to get a second opinion and / or get an MRI of your skull to get a better idea of what's going on there. As my myeloma specialist likes to say, "If you tell a radiologist that you suspect multiple myeloma, he / she may find lytic lesions where they don't truly exist". That in fact happened to me when I was first being diagnosed. My first radiologist said it looked like I had a lytic lesion in one of my bones based on looking at my x-ray. I then took my x-ray results to a second radiologist, and he couldn't find any evidence of a lesion whatsoever. I then had a PET/CT scan to finally prove that no lesion existed.

Good luck, and let us know how things go after your bone marrow biopsy.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Elevated free light chains, anemia & skull lesions.

by Little Monkey on Sat Dec 30, 2017 12:01 am

Can an infection or an autoimmune response also cause the kappa-lambda ratio to be slightly outside the reference range (e.g., 1.80)?

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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