[sdenny]

Bence Jones proteins

by sdenny on Tue Nov 13, 2012 7:20 am

Hi to everyone on the Myeloma Beacon. I am new to this site and I am waiting on test results that showed paraproteins in my serum and urine. I was positive for bence jones proteins in my 24hr urine test.
Question 1
does that deternine if you have MGUS or myeloma. Am I more likely to have myeloma if present in urine as some people only have positive in serum after electropheresis?
Question 2
How do you determine if a person is MGUS or very early stage myeloma?

This would have to be one of the most confusing conditions I have come accross and I am a nurse. Way beyond my nursing knowledge. Any advice would be warmly recieved.

Many thanks
any help would be a support
Susan Denny

[agralen]

Re: Bence Jones proteins

by agralen on Tue Nov 13, 2012 2:30 pm

I have MGUS with Bence Jones protein in my urine and no monoclonal in my serum. From my research it seems that USUALLY Bence Jones in the urine makes it more likely to be myeloma but....nonetheless I have been classified as MGUS. It's my understanding that the best way to differentiate between myeloma and MGUS is the bone marrow biopsy. If you have less than 10% plasma cells in your bone marrow you will likely be classified as MGUS. It is a very confusing condition and I have found out that a person's situation doesn't always follow the guidelines that you may have found on the internet! (as in mine. I have had MGUS now for 12 years)
Hope this helps.

[sdenny]

Re: Bence Jones proteins

by sdenny on Tue Nov 13, 2012 4:04 pm

Thank you for your input. And yes it is very confusing.

[Nipon Ginko]

Re: Bence Jones proteins

by Nipon Ginko on Tue Nov 13, 2012 5:13 pm

Hi this may not be much help but my Multiple Myeloma was determined by first blood test and then by a bone marrow biopsy , good luck on your treatment - they have came a long ways since my original dia. in 2004 . best regards N.G.

[Dr. Edward Libby]

Re: Bence Jones proteins

by Dr. Edward Libby on Tue Nov 13, 2012 9:33 pm

Hi Susan
I am glad you mentioned how complicated all of this is...I feel that way too sometimes !
You need more information to be able to determine if you have symptomatic myeloma (hopefully not) or one of the pre-myeloma conditions or even something other than myeloma. I dont think we can predict much based on the information available so far.

Things that are really necessary in order to decide if a patient does or does not have myeloma include :
1) Bone marrow biopsy
2) Blood testing including serum protein electrophoresis and serum free light chains
3) Skeletal survey (xrays of all of your major bones)

I recommend that you wait for your testing that is pending right now and in the mean time become familiar with the basics of myeloma and the pre-myeloma conditions.
Search the Myeloma Beacon for terms like "myeloma diagnosis", go the the Beacon's resources page for a basic overview, look at the links section and visit the Leukemia and Lymphoma Society website as well as the International Myeloma Foundation site for even more information.Once you have all of your results you should discuss them with an oncologist and ...if you like... bring them to the Beacon and we can review them with you.
Best of luck with this we will be here when all of the data comes in !

[RDavis]

Re: Bence Jones proteins

by RDavis on Mon Dec 10, 2012 6:39 pm

sdenny wrote:
> Thank you for your input. And yes it is very confusing. After a long year since Jan 27th I fell and broke my main two bones in my foot. I've had surgery 3 times and in hosp 5 times/ While I was treated for Ostioporis(probably not spelled right. I was diagnosed with staph and Mersa. My regular Dr. sent a note to me wanting to get a urine test done.Got the results back today and it showed positive for benge jones protein. Does this mean I'm through with life as it once was?

[RDavis]

Re:POSITIVE URINE TEST SHOWED POSITIVE FOR BENGE JONES PROT

by RDavis on Mon Dec 10, 2012 6:53 pm

I'm not knowing how I can get on here, maybe you can help. Jan 27. I fell and broke the two main bones inthe foot. I still can put pressure on this. Reason for telling this is I ended up with steph and mersa. I've been treated for infection by ivs and pills. When my dr. Called me to have this urine test done. She's very concerned. The test showed positive for benge jones protein. She got me an appointment with cancer dr. I'm scared crazy right now. Could you help me out? My dr. On vacation and won't be back until 12/20/12

[Dr. Jason Valent]

Re: Bence Jones proteins

by Dr. Jason Valent on Tue Dec 11, 2012 5:47 pm

Criteria for myeloma needing treatment.
M-protein in blood or urine and at least one of the following: elevated blood calcium, kidney damage based on blood testing (creatinine level), anemia (low red blood cell count), bone disease

MGUS can have both blood and urine M-proteins as well without any of the above findings.