[Misterboy]

Plasmacytoma or myeloma? Kappa/lambda ratio increasing

by Misterboy on Sun Sep 27, 2015 5:37 pm

Hi all and firstly a big shout out to all contributors on TMB - it has been a huge help in the last year!

I was hoping someone might be able to help me understand things further. I was diagnosed with a plasmacytoma 9 months ago, it was discovered around the spinal cord in my thoracic spine and following emergency surgery I am pleased to say I am still walking, which was something I was told to prepare the worst for.

Once I had sufficiently recovered from the operation, there followed 5 weeks of radiotherapy after which I wrongly assumed everything would be ok.. for a while at least!

Since then my kappa result have steadily increased over the last four months, my lambda and decreased and my ratio is currently 191. I have two specific areas of rib pain and a further one in my lower back and am due to have a PET scan.

My questions are this:

1. With these symptoms and results - at what point should I have further treatment and what is that likely to be?
2. taking into account the above - when does a plasmacytoma become myeloma?

Any experiences, help or advice would be greatly appreciated.

Thank you

[Multibilly]

Re: Plasmacytoma or myeloma? Kappa/lambda ratio increasing

by Multibilly on Sun Sep 27, 2015 7:12 pm

Hi Misterboy,

Welcome to the forum and congrats on making it through your surgery... although I'm sorry to see you here under these circumstances.

First off, I'm not a doc.

But if the PET/CT shows that you've developed lesions elsewhere (such as your on your rib and/or on your spine) and they are due to a monoclonal gammopathy, then you would no longer have a diagnosis of a solitary plasmacytoma and would meet the criteria for symptomatic multiple myeloma by virtue of your additional bone involvement (the "B" in the CRAB criteria). If you are experiencing organ damage as defined by the CRAB criteria, then you start treatment at that time. See:

https://tinyurl.com/pkl7m4e

Secondly, the new IMWG guidelines would define an FLC ratio of 191 as being a "Myeloma Defining Event" and some docs may suggest treatment based on reaching that level (provided the involved FLC is > 100 mg/L). See:

https://myelomabeacon.org/news/2014/10/26/new-multiple-myeloma-diagnostic-criteria/

Have you had a bone marrow biopsy recently?

How's your M-spike, calcium, creatinine and hemoglobin level doing?

Are you working with a top multiple myeloma specialist?

Hope this helps...

[Misterboy]

Re: Plasmacytoma or myeloma? Kappa/lambda ratio increasing

by Misterboy on Mon Sep 28, 2015 2:50 am

Hi Multibilly

Thank you so much for your reply, it is very helpful and I appreciate it.

Yes my kappa is above 700 and my lambda is 3.5. My last ratio was 114 so it seems quite a hike?!

I guess I need to see what the PET says but "if" this comes back ok I am not sure what this would mean taking into account my kappa/lambda?

I last had a bone marrow biopsy in April, which came back ok. My creatinine, heamo and others are ok (so I am told). I am not sure what M-spike is.

All the best

[Multibilly]

Re: Plasmacytoma or myeloma? Kappa/lambda ratio increasing

by Multibilly on Mon Sep 28, 2015 9:02 am

Hi Misterboy,

An M-spike is a common nickname for the amount of monoclonal immunoglobulins in your blood. It may also be referred to as M-protein, monoclonal myeloma protein, paraprotein, abnormal protein, etc.

Unless you have one of the less common monoclonal gammopathies that does not express an M-spike in your blood, you should find the M-spike value on your serum protein electrophoresis (SPEP) test results under one of the above names. The link to the handbook I provided goes into more detail on what an M-spike is.

In any case, it's an important marker to keep track of (unless you don't have one to begin with).

Again, if you aren't working with a specialist that works exclusively with multiple myeloma patients (not just an oncologist that may have some familiarity with multiple myeloma), I would really encourage you to seek one one out. If you let us know what city you are in, folks on this forum can make some recommendations.

[Misterboy]

Re: Plasmacytoma or myeloma? Kappa/lambda ratio increasing

by Misterboy on Mon Sep 28, 2015 10:32 am

Hi Multibilly,

Thanks again for your response, I have now had chance to read the leaflet you linked to and together with your responses it makes a whole lot more sense!! Shame some professionals can't be as descriptive with the detail but taking your point into account I think I now understand why.

I have read some names and suggestions on other parts of this forum and now I feel a little more informed I feel confident to find me a 'specialist'!

Thanks again.