Hello everyone,
I don’t typically post online, but you never know when something you share may help someone else, as it has for me by finding this site.
I was diagnosed yesterday with MGUS! The diagnosis was finalized after my bone marrow biopsy came back with "monoclonal plasma cell infiltrate of 5-10% of the marrow cells".
My issues began around the beginning of November 2018 with difficulty swallowing and getting choked on food. I saw my endocrinologist for a thyroid ultrasound on December 10, multiple swollen lymph nodes in my neck. He prescribed Augmentin 800 mg (amoxicillin and clavulanate potassium).
Within a few days my voice became very raspy and hoarse sounding. I was also waking up at night feeling like I was gasping for air. I had a CT scan which showed a prominent opacity at the base of my tongue, possibly lingual tonsils. I was sent to an ear, nost, and throat specialist (ENT) and pulmonologist had several tests done, barium swallow, etc. and was told I have reflux, started on Protonix (pantoprazole) . Tests ordered
December 17, 2018:
Kappa Free Light Chain, S - 9.56 mg/dl (0.3300-1.94)
Lambda Free Light Chain, S - 0.611 mg/dl (0.5700-2.63)
Kappa/Lambda Ratio - 15.6 (0.2600-1.65)
Referred to oncologist/hematologist, following tests ordered to evaluate for amyloidosis, lymphoma, and multiple myeloma.
December 26, 2018:
Immunofixation: Small monoclonal IgG Kappa within the gamma fraction.
January 3, 2019
Repeated Free Light Chains:
Kappa Free Light Chain, S - 16.9 mg/dl (0.3300-1.94)
Lambda Free Light Chain, S - 0.752 mg/d (0.5700-2.63)
Kappa/Lambda Ratio - 22.5 (0.2600-1.65)
MRI Spine and Bone Survey showed no lesions.
January 11, 2019
Bone Marrow Aspiration & Biopsy (Jan 25, 2019) - Monoclonal plasma cell infiltrate of 5-10% of the marrow cells.
January 16, 2019
Biopsy of Lingual Tonsil area: Negative
I still have my original symptoms.
Referred to university hospital for possible robotic removal lingual tonsils.
Forums
5 posts
• Page 1 of 1
Re: MGUS diagnosis: points of reference for others
Welcome to the forum, Liz, and thank you for sharing the process you went through for your diagnosis and what the results were that you got.
It looks like your doctors have been very thorough in what they tested leading up to your diagnosis. Did you ever have a serum protein electrophoresis (SPEP), however, and if so, did it indicate whether you have a paraprotein ("M-spike", "abnormal protein band", "monoclonal protein", etc.)? The serum immunofixation test you had tells you whether or not you have monoclonal protein in your blood and what type it is. The SPEP test is what measures how much monoclonal protein is in your blood.
Given your serum free light chain test results, your doctors probably will want to repeat the test within the next 1-3 months. I personally would request that it be done again within the next month, and then maybe every 3 months for the next year or two, assuming the next set of results shows some stability.
Based on the symptoms you've had, the one thing your doctors probably want to ensure is that none of the growths in your throat, mouth, and head are "extramedullary plasmacytomas". Those are basically collections of myeloma cells, or tumours, that occur outside of the bones. I assume this is being checked through the biopsies and scans you are having. You might inquire whether additional imaging, such as a PET scan, might help rule out plasmacytomas. Such scans might not be necessary, though, based on the biopsies and scans you've already had.
Although it might be a little scary to read, you may find it useful to review the posts in this forum discussion:
"Extramedullary plasmacytoma of the tonsil" (started Jan 10, 2014)
Cheers!
It looks like your doctors have been very thorough in what they tested leading up to your diagnosis. Did you ever have a serum protein electrophoresis (SPEP), however, and if so, did it indicate whether you have a paraprotein ("M-spike", "abnormal protein band", "monoclonal protein", etc.)? The serum immunofixation test you had tells you whether or not you have monoclonal protein in your blood and what type it is. The SPEP test is what measures how much monoclonal protein is in your blood.
Given your serum free light chain test results, your doctors probably will want to repeat the test within the next 1-3 months. I personally would request that it be done again within the next month, and then maybe every 3 months for the next year or two, assuming the next set of results shows some stability.
Based on the symptoms you've had, the one thing your doctors probably want to ensure is that none of the growths in your throat, mouth, and head are "extramedullary plasmacytomas". Those are basically collections of myeloma cells, or tumours, that occur outside of the bones. I assume this is being checked through the biopsies and scans you are having. You might inquire whether additional imaging, such as a PET scan, might help rule out plasmacytomas. Such scans might not be necessary, though, based on the biopsies and scans you've already had.
Although it might be a little scary to read, you may find it useful to review the posts in this forum discussion:
"Extramedullary plasmacytoma of the tonsil" (started Jan 10, 2014)
Cheers!
Re: MGUS diagnosis: points of reference for others
Hi Liz,
Welcome to the forum, but sorry that you find yourself here. As usual, Ian makes some good recommendations.
Did they test you for amyloidosis when they biopsied your lingual tonsil area? That is, did they do a Congo red stain test on the biopsy sample? Amyloidosis can present with the same lab results as MGUS, but can cause amyloid (a type of protein) deposits in one's tonsils, tongue and elsewhere in one's body. Amyloid protein is quite different than the myeloma cells that would be found in an extramedullary plasmacytoma that Ian mentions in his post and one has to be specifically looking for it in order to detect it.
A Congo red stain test is usually run when one has a bone marrow biopsy, but a negative result on that test doesn't guarantee that one doesn't have amyloidosis.
Best of luck to you and let us know how things turn out.
Welcome to the forum, but sorry that you find yourself here. As usual, Ian makes some good recommendations.
Did they test you for amyloidosis when they biopsied your lingual tonsil area? That is, did they do a Congo red stain test on the biopsy sample? Amyloidosis can present with the same lab results as MGUS, but can cause amyloid (a type of protein) deposits in one's tonsils, tongue and elsewhere in one's body. Amyloid protein is quite different than the myeloma cells that would be found in an extramedullary plasmacytoma that Ian mentions in his post and one has to be specifically looking for it in order to detect it.
A Congo red stain test is usually run when one has a bone marrow biopsy, but a negative result on that test doesn't guarantee that one doesn't have amyloidosis.
Best of luck to you and let us know how things turn out.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: MGUS diagnosis: points of reference for others
Thank you, Ian and Multibilly, for the information and recommendations you provided. I wanted to wait to reply until I knew some answers, so I picked up copies of some of my results yesterday.
I was told I have a paraprotein / monoclonal protein. I still am not sure as I look at all of these results which indicates the level. My 24-hour urine was normal I believe.
They did test for amyloidosis on my tonsil biopsy and it was negative. It was also negative in my bone marrow. I am also concerned about my "increasing serum free light chain".
The flow cytometry report reads:
Bone Marrow: Monoclonal plasma cell population, consistent with a plasma cell neoplastic process.
Yesterday, I called the doctor's office at cancer center where the bone marrow biopsy was done and ask what this means, but I haven't heard from anyone yet.
I was referred to University of Kentucky Medical Center Otolaryngology, my appointment is February 14. I still am having trouble swallowing food, getting frequently choked, and I am still very hoarse sounding.
I have always felt I was very healthy other than Hashimoto's (hypothyroidism). I take NP Thyroid 220 mg (dessicated) and I do quite well since I switched from Synthroid.
Thanks,
Liz
I was told I have a paraprotein / monoclonal protein. I still am not sure as I look at all of these results which indicates the level. My 24-hour urine was normal I believe.
They did test for amyloidosis on my tonsil biopsy and it was negative. It was also negative in my bone marrow. I am also concerned about my "increasing serum free light chain".
The flow cytometry report reads:
Bone Marrow: Monoclonal plasma cell population, consistent with a plasma cell neoplastic process.
Yesterday, I called the doctor's office at cancer center where the bone marrow biopsy was done and ask what this means, but I haven't heard from anyone yet.
I was referred to University of Kentucky Medical Center Otolaryngology, my appointment is February 14. I still am having trouble swallowing food, getting frequently choked, and I am still very hoarse sounding.
I have always felt I was very healthy other than Hashimoto's (hypothyroidism). I take NP Thyroid 220 mg (dessicated) and I do quite well since I switched from Synthroid.
Thanks,
Liz
-
Lyco77 - Name: Liz
Re: MGUS diagnosis: points of reference for others
Hi Liz,
All things considered, it sounds like good news that you are not suffering from an extramedullary plasmacytoma or amyloidosis. Wishing you all the best.
As an aside, many of us with monoclonal gammopathies tend to suffer from hypothyroid issues (including me). You might find these MGUS hypothyroid survey results to be interesting:
https://myelomabeacon.org/forum/weekly-poll-hypothyroidism-mgus-t4189.html
All things considered, it sounds like good news that you are not suffering from an extramedullary plasmacytoma or amyloidosis. Wishing you all the best.
As an aside, many of us with monoclonal gammopathies tend to suffer from hypothyroid issues (including me). You might find these MGUS hypothyroid survey results to be interesting:
https://myelomabeacon.org/forum/weekly-poll-hypothyroidism-mgus-t4189.html
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
5 posts
• Page 1 of 1