How To Monitor Bence-Jones?

Mom has Bence-Jones. Diagnosed March 2007. Had 6 sessions of Thal-Vel-Dex with numbers returning to starting after 3 months. She is now on the 5th out of 6 Rev-Dex-Dox and numbers (blood lambda-cappa) got worse again after the 4th session. Her doctor shrugs and says that the biopsy after the 6th session will show her situation. I am extremely angry - her MM was caught early, doctor kept feeding us with "80% chance of remission" before the first chemo and with "90% chance of remission" before the second one. I understand this is not the disease where anyone can make any guarantee - but - with intact 13th chromosome, good markers and stage 1 HOW on Earth it cannot be kicked under control? Our life is difficult as we are in Russia and here the doctors do not treat MM at all untill it is stage 3. So mom travels to Vienna for her chemo. Question - particularly with Bence-Jones how the situation is monitored? Biopsies every 3 months or are there blood tests that can do the trick considering now her freelight test is not good but her doctor says that only biopsy is telling? How do you monitor your status? Desperate here...

Hi YanaMom --

I was under the impression that one could get the best response of measuring Bence Jones by using a 24 hour urinalysis collection method.  Has she had one of these done?  On top of that, she could be having skeletal survey's & bone marrow biopsies, once a year. On top of this regular complete blood tests on a monthly basis including the measurement of the paraprotein (M spike). These tests will help to measure the progress/or remission that is happening. I've been going through all of these tests for the past 5 years as well as something called a Sistamibi - a neuclear xray which, I"m told, shows 'active' areas of MM. In addition there have been numerous CT scans and an MRI, but then my MM is basically in all my bones.

I can't imagine having to travel all the way from Russia to Vienna for MM treatment -- you really have a difficult myeloma journey!  Why don't they treat myeloma in Russia?  I was under the impression that Russia was equally as modern as most of the west with regard to medical treatment -- is this wrong?

Best wishes as you help your mom to battle this disease -- she is blessed to have your love and support.  You are in our thoughts and prayers. Take good care, Cath

On 4/4/2008 poppy/cath wrote:

Hi YanaMom --

I was under the impression that one could get the best response of measuring Bence Jones by using a 24 hour urinalysis collection method.  Has she had one of these done?  On top of that, she could be having skeletal survey's & bone marrow biopsies, once a year. On top of this regular complete blood tests on a monthly basis including the measurement of the paraprotein (M spike). These tests will help to measure the progress/or remission that is happening. I've been going through all of these tests for the past 5 years as well as something called a Sistamibi - a neuclear xray which, I"m told, shows 'active' areas of MM. In addition there have been numerous CT scans and an MRI, but then my MM is basically in all my bones.

I can't imagine having to travel all the way from Russia to Vienna for MM treatment -- you really have a difficult myeloma journey!  Why don't they treat myeloma in Russia?  I was under the impression that Russia was equally as modern as most of the west with regard to medical treatment -- is this wrong?

Best wishes as you help your mom to battle this disease -- she is blessed to have your love and support.  You are in our thoughts and prayers. Take good care, Cath

Ah...Russia...They are just convinced here that MM should not be touched until stage 3 or so as according to them early treatment does not guarantee longer survival. I stopped thinking about it as mom started treatment anyway. As for 24 urinalysis  -  they sneer at it in Vienna and say that the FreeLightChain blood test is more accurate. Something I am really bothered about though - the elusive M-spike. I was under impression that if you have a Bence-Jones variety you don't have an M-spike. Am I very wrong?

On 4/4/2008 poppy/cath wrote:

Hi YanaMom --

I was under the impression that one could get the best response of measuring Bence Jones by using a 24 hour urinalysis collection method.  Has she had one of these done?  On top of that, she could be having skeletal survey's & bone marrow biopsies, once a year. On top of this regular complete blood tests on a monthly basis including the measurement of the paraprotein (M spike). These tests will help to measure the progress/or remission that is happening. I've been going through all of these tests for the past 5 years as well as something called a Sistamibi - a neuclear xray which, I"m told, shows 'active' areas of MM. In addition there have been numerous CT scans and an MRI, but then my MM is basically in all my bones.

I can't imagine having to travel all the way from Russia to Vienna for MM treatment -- you really have a difficult myeloma journey!  Why don't they treat myeloma in Russia?  I was under the impression that Russia was equally as modern as most of the west with regard to medical treatment -- is this wrong?

Best wishes as you help your mom to battle this disease -- she is blessed to have your love and support.  You are in our thoughts and prayers. Take good care, Cath

and of course thank you for your kind words...