Urine results and Bence Jones

Hi Redc,

Welcome to the forum.

The short answer is that it could be myeloma. According to Chat-GPT, there are 3 main options:

"Frothy urine plus Bence Jones proteins usually indicates a plasma cell disorder, most commonly:

1. Multiple myeloma
→ Excess plasma cells make monoclonal light chains (Bence Jones proteins).

2. Light chain disease or light chain amyloidosis
→ Only light chains are produced; can damage the kidneys.

3. MGUS (Monoclonal Gammopathy of Undetermined Significance)
→ A benign condition but can progress to myeloma." [However, for many people it never progresses to myeloma]

I have to emphasise that people can live with myeloma or with amyloidosis for many, many years to a ripe old age. Personally, I was diagnosed with myeloma nearly 3 years ago and still going strong. Working, working out in the gym, going on holidays...

• Thank you for your reply, much appreciated 

Hello Redc,

I was diagnosed with Kappa Light Chain MM in march this year.  It is a more aggressive type of mm but the treatment is the same  as for any other.  All the test you mention I had too save the frothy urine.  I already have kidney problems insomuch as they dont filter too well, however I have been ok on the treatment and they have kept at the same level by drinking upto 3 litres a day.  My Kappa light chains in the beginning were 10,700 when I started on Daratumumab and Lenalidomide and I have done really well, bearing in mind I am 82 years old.  Please try not to worry too much, do what the body tells your husband to do

I have finished the main treatments and am in remission and on maintenance treatment.

Good luck to you both,  Pat

Thank you for your reply Pat, glad to read you are doing well.

The phone call from the consultant saying hubby was being referred to haematology came on hubby's 66th birthday which was also his official retirement day

It's the not knowing if he definitely has cancer or not and the waiting that is hard. I know how he feels from when I was waiting on my own diagnosis.

Where you diagnosed by tests your GP requested or by haematology?

Many thanks

Hello. I am also being diagnosed as having light-chain myeloma. In my case it is the other type Lambda that have commencing showing in the urine as BJP. I read that MM can be further classified by immunoglobulin type:

• • IgG myeloma — most common (~50% of cases)
  • IgA myeloma — about 20–25%
  • IgD, IgE, or IgM myeloma — rare forms
  • Light-chain myeloma (also called Bence Jones myeloma) — produces only light chains (kappa or lambda), not complete antibodies

the consultant says the treatment is the same for all of them

Is he being attended at the MacMillan cancer centre in London? 

All the best

carlos

Sorry you are having such a long wait, that is difficult. I have to say my own was much much quicker.  My haematoligist had the results already when I had my appointment but had to confirm with a bone marrow biopsy, so just another week and I was on the treatment.  However, I have to confess that I live in France which has the best health care in europe.  It isnt free like the uk but fantastic when you are the System.

I can only say that these new treatments are fantastic so try not to worry too much.  My light chains fell from 10,700 to 478 after just three treatments and continued to halve.  I still have a few left, but the worry is still there when you don't know.  I think it is the same for everyone though as you must know yourself.

Do please let everyone know your husbans progress.  There is much support and kindness here.

Kind regards.  Pat

Hi Redc     jumping on the back of the    conversation and thread,   i  also was  diagnosed with suspected MM  on my  66th Birthday,   my retirement   days 30 months ago,  now   19 months post Stem cell  transplant  and in remission,     the bit i  wanted to add,  and hope the  same response happens for you,  by GP  put me on Fast track Cancer check,  and in the first two weeks  i had been given  an  X ray,    an MRI Scan,  more blood tests and the important one i think was the  Bone Marrow biopsy,   which confirmed it,   the Haemotoligst i saw on the 3rd week,  said yes  its MM,   you are young and fit,  we will tackle  this aggressively,   my wife and i left the appointment feeling so much better than before we went in,   i like Chicken2  am leading a good life,   active,   good luck,  keep in touch on the Forum  there are some top people active that give good honest advice     Kevin

Sorry missed replying to your question..My own doctor sent an email to the haematologist when the kappa light chains were discovered on a blood test she had requested.    Within a week I had an appointment to go to the hospital for a further blood test.  However tests for light chains are very specialised and were sent to another lab.  I had the results a week later and my own doctor suspected I had  kappa free light chain mm.  I think within a month of my doctors blood test request I was on treatment.  I also had an xray on my back which proved I had lots of athritis but no breaks.  Not very helpful to you I'm afraid. Pat

Thank you for your reply, we are in Wales.

We do now have a copy of the blood results and IgA is in red.

I'm hoping its not cancer

Thanks again Pat for your reply. Agree the wait of not knowing is the hardest. Once you know you can deal withit .

Hope your light chains continue to fall with each treatment.

X