Bence Jones but no myeloma? Possible?

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Bence Jones but no myeloma? Possible?

by shangogh on Sun Aug 09, 2009 12:00 AM

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Hello there- I have a very confusing situation and wondered if any of you had any insight. My dad (60) was told by his internist that high levels of bence jones protein had shown up in some tests they had run. He also had elevated free kappa light, and many of the symptoms of myeloma (anemia, carpal tunnel in both arms, severe back pain, and lesions on his leg bones). He referred him to an oncologist who did another battery of tests (I'm sorry that I don't know specifics). The oncologist looked over the OLD test results and said it definately looked like MM. So they made an appt for a bone marrow biopsy, and they would also go over the new test results that day before the biopsy.

However, on the day of the biopsy, the doctors office called and said there was no need to do it. My dad went in and met with the PA and she told him that although he had many symptoms, they just didn't feel that it was MM. He was so flustered that he forgot to ask if they found the BJP still. His kappa light chain levels had actually increased since the first test, but they felt that was because he had lots of ulcers or something. They told him to go back to his first doc and get referrals to specialists for all of his symptoms, and to come back in a month to retest just to be sure.

Can you see why this is sooo confusing? Two docs were sure it was MM (and our family went through 3 wks of emotional turmoil that I know you all understand), then they had some kind of conflicting test results and wouldn't do the bone marrow biopsy to confirm? Does anyone have any insight? Can the BJP be present in any other condition?? Should we seek a second opinion? Thank you for your help!

RE: Bence Jones but no myeloma? Possible?

by teachoz on Sun Aug 09, 2009 12:00 AM

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Hi,

Yes, it does sound confusing, but my first question to you would be are any of the drs. he has seen Multiple Myeloma specialists?? With the lesions, especially, I would suggest you get him to someone who specializes in Multiple Myeloma, and get that bone marrow biopsy done as soon as possible.

Even regular oncologists aren't really qualified to give the correct diagnosis sometimes. Good luck with your future testing. I hope everything gets sorted out for you both.

Sorry I can't help you with the Bence Jones, but if you have any more questions, feel free to ask.

Mary Ann

RE: Bence Jones but no myeloma? Possible?

by UTboy on Sun Aug 09, 2009 12:00 AM

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I agree with Mary Ann........get him to a specialist.  Those lesions that appeared in his imaging didn't just happen; nor did the Bence Jones.   I had bence jones and lesions as well.  Initially, there was confusion as to what was really going on.  However, MM was confirmed and we moved on with treatment.  Find a specialist. 

RE: Bence Jones but no myeloma? Possible?

by stevem57 on Sun Aug 09, 2009 12:00 AM

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I would bet 99 to 1 that your dad has MM. Go to another doctor, quickly. Bence jones and bone lesions mean MM, no other way around it.

RE: Bence Jones but no myeloma? Possible?

by LoisA on Sun Aug 09, 2009 12:00 AM

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I agree with everyone.  I had lesions, elevated bence jones proteins also.  Try to find a myeloma specialist.  The bone marrow biopsy will confirm either he has MM or not.

Good luck and let us know what happens.

Lois

RE: Bence Jones but no myeloma? Possible?

by shangogh on Sun Aug 09, 2009 12:00 AM

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Thank you all so much for your input. This is what I had been suspecting, but also didn't want to seem "ungrateful" for the good news. I will encourage him to see a specialist. I really don't know if the docs he went to were specialists... You were all so helpful! Thanks again and best of luck to you all during your treatments!

RE: Bence Jones but no myeloma? Possible?

by Mariee on Fri Aug 14, 2009 12:00 AM

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Hi Shan,

You and your father need to insist on that BMBX!  Don't let those Drs. put it off, it is uncomfortable but the only was you will know for sure!!  The bone leisons are very serious.  E-mail or call the IMF hotline for answers.  dbirns@nyeloma.org         1-800-452-2873

mariee

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