I recently went for tests for osteoporosis. The urine test came back positive for Bence Jones protein Kappa. My hematologist has ordered a follow up blood test.
Has anyone had these test results? Also, what does it mean for someone with CLL?
Of course I have done the usual google searches so I am aware of what the protein indicates
Thank you, Janet
Hi Janet, my CLL cells produce a kappa light chain Bence Jones protein, in fact the presence of that monoclonal protein in my blood was what led to my CLL diagnosis by a rheumatologist some 23 years ago. In my case the protein precipitates at slightly lower than 37 degrees C (normal body temperature). It is called a cryoglobulin and causes Raynaud's symptoms when my hands and feet get cold. I know that treatment is working when my Raynaud's symptoms disappear, and know that I am relapsing from treatment when I get Raynaud's symptoms. It's cheaper than a blood or urine test!
Hopefully others will comment on their experience with other kinds of Bence Jones proteins.
gardening-girl
Thank you so much. Your response made me feel better
Gardening-girl. Did you have any treatment specific to the Bence Jones? When you refer to treatment do you mean for CLL?
Again thank you.
Janet, my treatments are for CLL, but treatment is always initiated at a fairly low lymphocyte count due to my most serious symptoms, which are sudden sensory neural hearing loss and loss of balance. It has never been determined whether it is the kappa light chain that is causing the hearing loss and loss of balance. As with the disappearance of Raynaud's symptoms upon CLL treatment, hearing and balance are also restored upon treatment, but always fade upon relapse.
Thank you so much for responding. I have been off balance lately and would never have pit the two together.
Good to hear from you Janet, How are you getting along? Are you still in W & W?
Beth
Hi Beth. I hope all ie well This are crazy times. Thank you for reaching out. I am still in Watch and Wait. Feeling lousy with extreme fatigue and other issues. I have put off my appointment with the Hematologist because of Covid. I realize it is time to see him. He really wouldn’t address the Bence Jones when I had a phone appointment with him.
Stay safe and well Janet
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