Today is Bence Jones Day…for ME, I mean. Bence Jones is a typical multiple myeloma monitoring test. But before I get into the nitty-gritty, I would like to mention that this morning I actually looked up Dr. Henry Bence Jones, an English physician and chemist who, in 1845 or thereabouts (some websites say 1847), discovered the existence of the proteins that bear his name. His name is also associated with the first recorded case of multiple myeloma in history, which I thought was a fascinating little historical fact. And he was a friend of Charles Darwin. Oh, but I digress!
Anybody who has ever taken this test (everyone with MGUS or SMM or MM, for sure!) knows what this test entails, but here’s a quick and not overly detailed explanation for those who haven’t. The test measures the presence and quantity of the Bence Jones proteins, which are small abnormal monoclonal proteins (free light chains) made by plasma cells. Now, proteins, generally speaking, are too large to be passed by the kidneys, but these little buggers are small enough to pass easily and quickly from the blood into the urine. When our blood contains too many of these proteins, our efficient bodies filter them out via the kidneys. I should note that during this passage they can damage the kidneys. Not good. Earlier today I read different statistics showing that these proteins are present in 40 to 80 % of myeloma patients. Healthy people don’t have a Bence Jones problem, of course.
In sum, the Bence Jones test is an important one. I have it done twice a year or so, and so far the test has been negative (and I plan to keep it that way!). I should mention that this test is not painful at all (it’s not a bone marrow biopsy, ouch!), but it IS a bit of a drag, especially for women. Every time we pay a visit to the bathroom in a 24-hour period, we have to collect the sample in a large container. Oh, plus, the collected liquid needs to be refrigerated. Since I refuse to keep my urine in the fridge next to our milk and vegetables (!), I bought a cooler that I use for this purpose ONLY. Okay, I have mentioned the word urine enough for one day. Tomorrow morning EARLY I am having my blood tests done at Careggi hospital and should have the results in two weeks or so. My next experiment begins tomorrow or the day after tomorrow. I will post about it in the next few days, once I have it all written down. Of course, my eight grams of curcumin will still be in the picture, but probably in capsule form.
They don’t tell you to chill it here Margaret. Maybe it’s cos we’re further north 🙂
Paul
Good luck with your tests, Margaret.
Old Bill
Yes Margaret, fingers X.
Paul
Hi Margaret,
I’m happy to hear you do not and have not had Bence Jones protein in your urine! That’s wonderful! I hope you continue to receive good news!
Unfortunately, I do have Bence Jones protein, aka, Free Lambda light chains in my urine. Does anyone out there know how much is too much? I’ve asked my onc and he didn’t know but will ckeck. It takes him a while to get back to me.
Also, may I ask if there is anyone out there who has low IgG, IgA and IgM? All mine are low and everyone else I’ve read about seems to be high. I’ve asked my onc and he says everyone is different. I would appreciate any and all feedback. Thanks. Donna
As Paul has mentioned, my oncologist has never mentioned refrigeration, and I don’t do it. I’m going to ask about that at the next visit.
Don
Hi Margaret,
Just found your site, diagnosed with IgA biconial Myeloma with reduced IgM and IgG in 2004. I get Iinfusions of IgG in the winter to boost my levels, to fight Pnuemonia. Good to know I’m not the only one that trawls the net to all hours trying to make sense of research, although I think you are doing better than me at cataloguing and making it available to others. I was particulary searching for articles on Honokiol when I found your site. (this sounds very interesting. Have you read anything about yucca’s properties, there is a bit of research in its use in RA, which I consider has some similarities to Myeloma.
Will visit your site again soon, hope you get over your flu symptoms quickly.
Sue XX
Hi. Doctors, after many searches, found, after an MRI a problem with my bone marrow in my spine, so decided to do a Bence Jones uriine test along with several blood tests. The only thing is they only took one sample and this was a mid afternoon one. I see that people are saying you need a 24 hour test to be sure. Does anyone know how long it takes to get the results back. I have waited a week with no news. Thank you for your time. Jan.
Hi Jan, it sounds as though you didn’t have a Bence Jones test, which takes place over a period of 24 hours during which you have to collect all your urine samples in one big container. On the day of the test, you throw away the first morning pee, and then you start collecting until the following morning (this time, though, you include the first sample). I am sure there are heaps of descriptions of this test online. I would ask your doctors. It sounds as though what you had was a simple urine test.
As for getting your results back, I usually wait a couple of weeks for my results, but every lab is different.
Take care,
Margaret
I, too, have been told that the urine in the 24 hour collection definitely needs to be refrigerated.
Hi Margaret,
Just found your online posts and I’m three years late, so not sure if you’ll get this! Was interesting reading because I’m in the same boat as Jan. I was definately marked down for Bence Jones test because I’d never heard of it before today and made a comment about the strange name. I had to submit urine along with loads of blood vials and nothing about a 24 hour collection – Strange!!! I’m in the UK so not sure if it run different here???? Hope your healthy and well.
Regards,
Laura 🙂
Hello Margaret!
I am newly diagnosed with a “FAINT” lambda FLC, and therefore “FAINT MGUS.” My doctor has 100% ignored my four emails asking a single question: Do I have the Bence Jones Protein?” It showed up in the serum, but not the 24 hour urine test. I am so very weary from figuring it out by myself. I have no idea what lambda means versus kappa . . . but I think it is not good news. I have albuminuria and osteopenia. I have been VERY distraught over it all, and equally as shocked. My hematologist does not respond at all to my question re Bence Jones. Would you be kind enough to diclose whatever it is you know re this condition. And btw, I have decided to begin the cu cumin . . . kindly help me Margaret, I am very upset and sad. Thank you, and God bless.