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Kappa Light Chain/Bence Jones Type of Myeloma...Confused

by terryl1 on Sat Sep 24, 2011 7:48 am

I was diagnosed with multiple myeloma locally (non-myeloma expert) in early August, 2011. He was already talking about treating me without even knowing my stage! I was finally able to see a myeloma expert last week at the NIH/NCI who had me undergo a series of blood and urine tests and I had a new skeletal survey and a concurrent MRI/PET scan. The new imaging tests were all unremarkable or normal showing no lesions, etc. So was my original survey from August, 2011.

I met with the NIH myeloma doctor and his team and was told I have a "kappa light chain" or Bence Jones type of myeloma. Apparently, a relatively small percentage of multiple myeloma patients have what I have. Most of the literature pertains to people not like me and I am confused.

My SPEP is normal but the myeloma proteins appear in my urine and on more advanced serum tests. My 24/hr urine M-Spike is 2115 mg/24 hr. My light chains are: kappa 436 mg/dl, lambda 0.23 mg/dl, ratio is 1895.65. I was also told conclusively by the myeloma expert that I am smoldering beyond a doubt based upon the lack of CRAB features, etc. My hemoglobin is 13.2. I am 49 and my blood counts are mildly below range. My albumin, calcium, LDH, etc. are normal. I was told I will be monitored every three months for any signs of progression.

It is difficult for me to find examples like myself when reading up on multiple myeloma because everything is skewed for the majority of multiple myeloma patients who have M-spikes in their SPEP's, etc.

I have been on an emotional roller coaster---first I need immediate chemo to you don't need treatment, etc.

Does anyone have my type of myeloma and don't my numbers appear high for someone "smoldering". Can that level of Bence Jones cause kidney problems even though I don't have any bone involvement, etc?

I appreciate the help.

terryl1
Name: Terry
Who do you know with myeloma?: self
When were you/they diagnosed?: August 10, 2011
Age at diagnosis: 49

Re: Kappa Light Chain/Bence Jones Type of Myeloma...Confused

by suzierose on Sat Sep 24, 2011 6:14 pm

Hi Terry,

I understand what you mean about the emotional roller coaster. But at least you are moving from negative to positive not a bad way to coast if you gotta be on a roller coaster!! :D

I do not know a lot about the numbers you are looking at but they don't seem high based on norms.

From what I understand the Bence Jones is a type of M protein that shows up in the urine and indicate renal function changes. Bence-Jones proteinuria also shows up in other auto immune diseases such as lupus, and rheumatoid arthritis and can cause a false positive. Immunofixation usually rules out false positives.

Did you have a bone marrow biopsy/aspirate or FISH test? If so, what percent of plasma cells do you have? One thing we know is that the therapy is directed at the plasma cell count and driving down the Beta2 microglobulin are any of those high? It sounds like you don't have too many plasma cells since your albumin is normal as the plasma cells crowded out the albumin and drive that number down.

Giving an unprofessional guess, I would say, that you have what is known as precursor stages which are too low to be detected by the surrogate clinical markers used for multiple myeloma.

Ergo, they will not say you should have chemo since it is so toxic and you are not exhibiting any end organ renal damage i.e. CRAB. Therapy is directed at preventing CRAB...and unless you have CRAB criteria, no one is going to risk giving chemo as it is too toxic.

However, those are the kind of questions you want to ask the multiple myeloma specialist. Sounds like you are in a gray zone.

If I were you I would count my blessings and pray.

Here is an article with smoldering myeloma criteria numbers in Table 1
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2816002/

Hope this helps.
Suzierose

If the above link doesn't work try this and click on full text in right column
http://jco.ascopubs.org/content/28/4/690.abstract
Last edited by suzierose on Tue Dec 18, 2012 10:04 pm, edited 1 time in total.

suzierose
Name: suzierose
When were you/they diagnosed?: 2 sept 2011

Re: Kappa Light Chain/Bence Jones Type of Myeloma...Confused

by terryl1 on Sun Sep 25, 2011 12:32 am

Thanks Suzierose, my plasma cell infiltration is over 30% according to my 8/11 BMB but the NIH myeloma expert said the report left a lot to be desired and they would perform their own. The lesson I learned from all of this is to educate yourself about multiple myeloma as much as you can and don't let a non-myeloma oncologist treat you before seeing a real multiple myeloma specialist at a major cancer center.

terryl1
Name: Terry
Who do you know with myeloma?: self
When were you/they diagnosed?: August 10, 2011
Age at diagnosis: 49

Re: Kappa Light Chain/Bence Jones Type of Myeloma...Confused

by suzierose on Sun Sep 25, 2011 4:15 am

Terry

I completely AGREE!!

You need a hem/onc multiple myeloma specialist PRONTO!!

Please get one.

NOt having one may be the primary reason you are feeling so disconcerted about the feedback you are getting. Although, NIH is THE BEST...maybe you did not know what to ask?

Wishing you all the best.

suzierose
Last edited by suzierose on Tue Dec 18, 2012 10:04 pm, edited 1 time in total.

suzierose
Name: suzierose
When were you/they diagnosed?: 2 sept 2011

Re: Kappa Light Chain/Bence Jones Type of Myeloma...Confused

by suzierose on Sun Sep 25, 2011 1:59 pm

Hey Terry,

I found this and thought it might interest you. I had not done a lot of reading on BenceJones or what makes that multiple myeloma distinctive, but perhaps this definition explains why you are not finding data either.

"Myeloma cells often produce an unusual amount of monoclonal (M) protein. This protein may be called Bence Jones protein when found in urine or an M-spike when found in blood. Whether this protein is found in the blood, urine or both varies among patients."

I am thinking that when you refer to your M spike, that is the same as Bence Jones only one is in blood and the other is in urine?

The M Spike is measured by the SPEP

So, I am wondering if there isn't data on BenceJones because it is covered under the umbrella of M protein when speaking of multiple myeloma? IOW's does it matter how it is measured and is that multiple myeloma distinctive from others without the BJ protein unless you are having renal problems? Which would be the R in CRAB.

You may find that the BJ subset population has more frequent renal problems or it may be that the renal function changes early in the course of multiple myeloma when there is BJ measured via urine.

In your case you are saying they are unable to detect an M spike, which sounds positive, and goes to the only marker being BJ proteins in your urine as the disease is not at a stage to be dectectable by the SPEP surrogate marker typically used. OTOH 30% plasma cells sounds a lot higher than the 10% they typically classify as SMM. Perhaps, this is what is confounding the hem/onc multiple myeloma specialist as well. IOW's you have no CRAB.

The other question to ponder is, if the M spike should rise/decline does it also impact the level of BJ in urine? Is that a goal of therapy to see the BJ in urine decline or is PFS the same as long as the M spike is not present or declining?. Just a few questions you may want to ask the multiple myeloma specialist.

I Don't know if this helps you in any way, but if it could, I wanted to pass it on.

and wishing you

a Very Happy grace-filled Sunday!!
Last edited by suzierose on Tue Dec 18, 2012 10:05 pm, edited 1 time in total.

suzierose
Name: suzierose
When were you/they diagnosed?: 2 sept 2011

Re: Kappa Light Chain/Bence Jones Type of Myeloma...Confused

by terryl1 on Sun Sep 25, 2011 6:39 pm

Thanks for all of your help Suzie Rose! I really appreciate all of your insights and I will try to ask these questions of the expert next week. Best wishes!

terryl1
Name: Terry
Who do you know with myeloma?: self
When were you/they diagnosed?: August 10, 2011
Age at diagnosis: 49

Re: Kappa Light Chain/Bence Jones Type of Myeloma...Confused

by Dr. Peter Voorhees on Wed Sep 28, 2011 5:41 am

Dear Terry,

The job of a normal plasma cell is to produce loads of intact antibody (for example, to fight off a particular infection). A normal antibody consists of two different proteins, a heavy chain and a light chain. Two heavy chains and two light chains are attached to one another to produce an intact, functional antibody. The heavy chain component can be IgG, IgA, IgD and rarely IgM. The light chain component is either a kappa or lambda light chain. For example, when someone refers to an IgG kappa "M spike, " that means that the myeloma is making an intact antibody consisting of two IgG heavy chains complexed with two kappa light chains. The abnormal or malignant plasma cells in your case are only making the light chain component of the antibody, specifically kappa light chains.

Free light chains, i.e. light chain antibodies that are not complexed with a heavy chain, are freely filtered through the kidneys. Because they are readily excreted in the kidneys, they do not reach very high levels in the blood stream in most circumstances and are more difficult to detect by a serum protein electrophoresis (SPEP).

The term "M spike" refers to monoclonal antibody (the antibody being made by the clonal, abnormal plasma cells) picked up on protein electrophoresis or immunofixation testing of blood OR urine. In your case, you do not have a detectable "M spike" by blood testing (SPEP) but you do have an "M spike" that is detected on urine testing. Bence Jones proteins refers to those monoclonal free light chains that are detectable in the urine. So, in your case, your "M spike" is the free kappa light chains (the Bence Jones protein) picked up on your urine studies, missed by the SPEP for the reasons outlined above. At the end of the day, this is more of a semantic problem. You have free kappa light chain myeloma and that is the most important thing to take away from all of this. Beacuse of this, 24-hour urine testing and serum free light chain testing will be the best way to monitor your disease moving forward.

A repeat bone marrow to get an accurate determination of extent of involvement is critical. A recent letter to the editor to the New England Journal of Medicine from the Mayo Clinic group suggested that those patients with smoldering myeloma who have plasma cell burdens in their marrow of >60% are at high risk of early progression.

Free light chain myeloma patients are at increased risk of kidney problems. As such, it will be important that you minimize your exposure to anything that might put your kidneys at risk (dehydration, ibuprofen-type drugs (non-steroidal anti-inflammatory drugs), IV contrast dye used for CT scans, etc). Also, because of the risk of kidney injury, I would advise close monitoring if this winds up being smoldering myeloma.

Good luck to you!

Pete V.
Dr. Peter Voorhees
University of North Carolina at Chapel Hill

Any advice provided in these postings is based on a very limited amount of information. There is no substitute for the care of your oncologist/hematologist. Therefore, all suggestions should be discussed with your treating physician. None of the comments presented here are meant to replace the evaluation of a patient by a knowledgeable physician.


Dr. Peter Voorhees
Name: Peter Voorhees, M.D.
Beacon Medical Advisor

Re: Kappa Light Chain/Bence Jones Type of Myeloma...Confused

by Cz on Sat Mar 24, 2012 8:12 pm

terry, still confused? I too have myeloma with no apparent lesions. It was discovered
When my kidneys were clogged with the myeloma proteins and my face and stomach swelled. I was diagnosed in 09 and endured an analogous stem cell transplant after months of chemo. How are you lately?

Cz

Re: Kappa Light Chain/Bence Jones Type of Myeloma...Confused

by Lin516 on Sat Apr 20, 2013 1:52 am

terryl1 wrote:
> I was diagnosed with multiple myeloma locally (non-myeloma expert) in early
> August, 2011. He was already talking about treating me without even knowing
> my stage! I was finally able to see a myeloma expert last week at the
> NIH/NCI who had me undergo a series of blood and urine tests and I had a
> new skeletal survey and a concurrent MRI/PET scan. The new imaging tests
> were all unremarkable or normal showing no lesions, etc. So was my original
> survey from August, 2011.
>
> I met with the NIH myeloma doctor and his team and was told I have a
> "kappa light chain" or Bence Jones type of myeloma. Apparently, a
> relatively small percentage of multiple myeloma patients have what I have.
> Most of the literature pertains to people not like me and I am confused.
>
> My SPEP is normal but the myeloma proteins appear in my urine and on more
> advanced serum tests. My 24/hr urine M-Spike is 2115 mg/24 hr. My light
> chains are: kappa 436 mg/dl, lambda 0.23 mg/dl, ratio is 1895.65. I was
> also told conclusively by the myeloma expert that I am smoldering beyond a
> doubt based upon the lack of CRAB features, etc. My hemoglobin is 13.2. I
> am 49 and my blood counts are mildly below range. My albumin, calcium, LDH,
> etc. are normal. I was told I will be monitored every three months for any
> signs of progression.
>
> It is difficult for me to find examples like myself when reading up on
> multiple myeloma because everything is skewed for the majority of multiple
> myeloma patients who have M-spikes in their SPEP's, etc.
>
> I have been on an emotional roller coaster---first I need immediate chemo
> to you don't need treatment, etc.
>
> Does anyone have my type of myeloma and don't my numbers appear high for
> someone "smoldering". Can that level of Bence Jones cause kidney
> problems even though I don't have any bone involvement, etc?
>
> I appreciate the help.

I was recently diagnosed with multiple myeloma Kappa Light Chain. I am very new into this. My hem/onc says he wants to watch my urine every 6 weeks and not begin treatment. He diagnosed me with Stage 1. I don't have any CRAB symptoms; but I can tell my kidneys are not filtering properly. I will try and stay in touch via this website and share as I go along in my process.

Lin516
Name: Lin
Who do you know with myeloma?: Myself
When were you/they diagnosed?: 04/09/2013
Age at diagnosis: 57

Re: Kappa Light Chain/Bence Jones Type of Myeloma...Confused

by Anonymous on Thu May 23, 2013 11:30 am

Hi Terry,

I was diagnosed with Multiple Myeloma in November of 2012 after many months of anemia, severe bone pain and lung issues. When they tested my numbers My Bence Jones was at 16000 and my Kappa somewhere around 5000. I was very late stage, had three tumors on my spine and lesions in my skull, ribs, spine and hips. Now 7 chemo cycles later I am down to 5000 in my Bence Jones and my kappalight chain is 1315. Itsounds to me we have the same kind, I just wish mine had been found sooner. They are getting me ready for a stem cell transplant in the next couple of months which should put me in remission, but I am searching other options of a more natural nature. I just found a trememdous amount of possitive info on Poly MVA and will probably purchase it at 185 dollars. I read many good testimonials and the research is very scientific. I hope this helps you. Even if you have to undergo the chemo it is not so bad with multiple myeloma. I have started to feel so much better since i started, just from lowering the multiple myeloma, and I excercise, and go about my day almost as I did before. I have no more bone pain, just some pain in my back where the tumors ate some of my spine and support, but I believe that will all go away as I am getting monthly treatments of Zometa which is rebuilding my bones. I hope this helps and gave you some hope as well.

Take care and lots of luck on your journey. I certainly grew alot (spiritually ) from mine and it has not all been bad :>)

Cherie

Anonymous

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