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polyclonal free light chains
I am frustrated regarding my situation. I have slightly elevated Kappa light chains, elevated polyclonal light chains, early onset osteopenia that is progressive, a Hx of low WBC & pancytopenia. Now I've developed protein in my urine, eye edema & water weight fluctions. Can polyclonal free light chains be part of myeloma? Does anyone have any advice or recommendations for a hematologist I can see in NC who might be able to assist me with this? I also had mild plasmacytosis & megakaryotic cells in poorly done bone marrow biopsy from 2009. Thank you so much.
Re: polyclonal free light chains
Hi, clearly you need to see a hem/onc for a full work up, including a new bone marrow biopsy. I would go to a major NCI approved cancer center at a university. The protein in the urine and edema can indicate renal issues. I wouldn't wait. What was your diagnosis in 2009 based on the BMB which indicated plasmacytosis (MGUS? or more?). Have you been monitored since then???? The increased light chains, low WBC, etc. clearly need a thorough and quick investigation. Good luck.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: polyclonal free light chains
I guess I'm confused here. Who is ordering these test? If they aren't a hematologist I would think they could recommend one?
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: polyclonal free light chains
A couple of places/resources to look into in NC. There are also folks on this site that live in NC that may be able to offer other suggestions
https://myelomabeacon.org/resources/treatment-centers/
http://www.lls.org/aboutlls/chapters/nc/
https://myelomabeacon.org/resources/treatment-centers/
http://www.lls.org/aboutlls/chapters/nc/
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: polyclonal free light chains
Yes I've see 3 hematologists over a 4 year course. I'm concerned about my Hx and the recent findings of elevated Kappa flc and polyclonal flc couple with protein in my urine, constant eye edema, and previous bmbx findings. I'm being told polyclonal flc is indicative that I don't have a blood mslignacy. I'm curious if anyone has had polyclonal flc in conjunction with multiple myeloma or related conditions? Whether I need further opinions or not, etc.? I was at the Hollings Cancer Center in SC.
Re: polyclonal free light chains
I agree with the other posts. I would have repeat labs and staging done (including bone marrow biopsy and imaging). That being said a polyclonal disease and proteinuria (protein in your urine- remember not all protein in your blood is antibody) also suggests renal disease (kidney). This may be related or unrelated to a plasma cell dyscrasia. Have you been seen by a nephrologist?
Do you have other signs of CRAB (Hypercalcemia, Renal Failure (elevated creatinine), Anemia, Lytic bone disease (osteopenia is difficult to call Bone disease in my book)?
This could be a number of diseases still including autoimmune, renal, or other. I think that I would try to find an academic center to have coordinated effort in identifying the root (or roots) of your symptoms.
We wish you luck. Happy New Year.
Do you have other signs of CRAB (Hypercalcemia, Renal Failure (elevated creatinine), Anemia, Lytic bone disease (osteopenia is difficult to call Bone disease in my book)?
This could be a number of diseases still including autoimmune, renal, or other. I think that I would try to find an academic center to have coordinated effort in identifying the root (or roots) of your symptoms.
We wish you luck. Happy New Year.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: polyclonal free light chains
Dr. Shain~ Thank you for your reply. Regarding full blown CRABS, I dont have other indications as of now however, I havent had the appropriate full body scan to rule out lytic bone lesions. While my CBC fluctuates between low normals to pancytopenia & everything inbetween, my incomplete BmBx indicated trace iron storage.
Unfortunately the most recent Hematologist is considered a multiple myeloma specialist, however a thorough Hx wasnt done. I was advised that with the slightly elevated Kappa flc & polyclonal flc in their findings, that I didnt have blood malignacy or require further follow-up. Hence my confusion.
Is there anyone you could recommend for me to contact in NC for further evaluation & possible coordination of care in order to obtain the proper diagnostics?
Thank you again. Happy New Year!
Best regards~
Unfortunately the most recent Hematologist is considered a multiple myeloma specialist, however a thorough Hx wasnt done. I was advised that with the slightly elevated Kappa flc & polyclonal flc in their findings, that I didnt have blood malignacy or require further follow-up. Hence my confusion.
Is there anyone you could recommend for me to contact in NC for further evaluation & possible coordination of care in order to obtain the proper diagnostics?
Thank you again. Happy New Year!
Best regards~
Re: polyclonal free light chains
Hi, why don't you contact Dr. Peter Voorhees, MD, who is a myeloma expert at UNC in Chapel Hill. He is also a wonderful advisor on this site and,like Dr. Shain, has helped us all out greatly. Good luck.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: polyclonal free light chains
In North Carolina there are several great Myeloma specialist including a new one in Charlotte. Duke has Dr. Gasperetta who is wonderful and who did my transplant and UNC has Dr. Vorhees. In Charlotte now we have a new program at the Levine Cancer Institute run Dr. Usmani who moved here recently from Little Rock. He is brilliant and accessible. It is not a research University setting but he has been able to get involved in several trials and is not stuck to doing only the Little Rock method...he has stated he treats each client individually ... I like him!
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bluemountain
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