[paulsParticipant]

I have light chain Myeloma, I understand what this is, but I struggle to understand my blood test results. When diagnosed my levels were 999 when on treatment they came down to 27, now since my treatment has been stopped they have increased to 121. The bit I dont understand is what should my levels be (I have been told between 0-26) also, what is a bad level, and when should I need to start treatment again.

[peterlParticipant]

Hi,

is your LC problem lambda or kappa?  And what are the units set against your measurements? For example mg/litre, or mg/dL?

peter

[paulsParticipant]

Thanks for the reply Peter,  it’s Lamda, and I don’t know what the units are,  they just tell me a number.

 

[peterlParticipant]

Hello again Paul’s,

Below is an extract that kind of deals with your questions:

<span style=”background-color: rgba(255, 255, 255, 0);”>”a significant paraprotein relapse is defined as … an increase in the absolute levels of … involved FLC level by more than or equal to 20 mg/dL (plus an abnormal FLC ratio) in 2 consecutive measurements separated by less than or equal to 2 months.”</span>

this is from the International Myeloma Working Group.  But it’ s not that helpful in some respects. I’m assuming that you live in the UK and that your lambda LC measurements are in mg/L.

Involve ve lcs are lambda in your case. It simply means that if you have a blood test on 12/9, then provided you have another one before 12/11, then if your LCs have increased by more than 200mg/L then you’re technically relapsed. But this assumes all other issues like bones, anaemia, calcium and renal are fine.

Im sending this from my iPad, which doesn’t like this www. Above, Involve ve should read involved. Sry for other formatting problems. It’s hard to correct earlier auto inserts once a block of text has been typed

best of luck,

peter

[rebeccaRParticipant]

Hi Paul I have lambda light chain. the normal range levels are kappa 3.3 -19.4 mg/ltr and lambda 5.71-26.3 mg/ltr so yes you are out of normal range. The ratio between kappa and lambda is the important figure and the normal ratio is 0.26 – 1.65 – out of this is abnormal and generally considered to indicate the MM is active. Light chains can notoriously bounce around between test results so they will look for consecutive increases before relapse is defined. However, treatment generally starts when there is damage to the body so some people can have light chains in the thousands and manage ok without any side effects/treatment whilst some, like myself, have a lot of impact when light chains are just 1000 – such is the individuality of MM. Your light chains are very low so guess you may be monitored more frequently (I am on 3 monthly) to indicate a trend/monitor your health. Hopefully they will go down again and this may be a blip (some people have reported an increase in test no.s when they were not feeling well and next time they were down again – I have experienced a slight drop in numbers after a holiday and have heard others report the same) so hopefully your results are a “blip”.

Best wishes, Rebecca

[paulsParticipant]

Thanks Peter and Rebecca for taking the time to reply to my question, I understand a bit more now. Paul

[peterlParticipant]

Hello again Pauls (and Rebecca),

I’m sorry for the formatting gobbledegook that was in my last post. I’m away from home and my laptop at the moment, and am using this ipad, which isn’t suited to posts on this website. So sorry about that. I don’t see a full readout of what I post until after submission and I hope this post is clearer.

Looking at Dr Libby’s detail from the myeloma working party, it is obviously acedemically correct, but there seems a bit of a gap to this and what is actually done by consultants in the nhs. I’m assuming you’re treated at an nhs patient?

Rebecca is correct in what she said in her post, and it’s not just light chain results that are the determining factor, but are read in conjunction with the particular consultants view of other possible physical difficulties. CRAB (calcium, renal, anemia and bone damage). Your serological response (test results from your blood test for your involved LC, that is lambda) , are more important if all other clinical issues are tested as okay. And I’m assuming that’s why you raised your questions in the first place.

There is the rub. To conform with the definition of relapse (ie requiring further treatment intervention) you would need to convince your medical advisor to perform the two tests within the two month period, to meet the professional requirements. And good luck with that!

But just looking at these tnt (time to next treatment) tests, I puzzle over the fact that if I have a whole series of two monthly tests and each time the FLC levels increase by say 190mg/L then whilst they don’t meet the relapse 200mg/L trigger level, then if they remained increasing at 190 after each two months, then within the space of a year they would be reaching a level of around 1000mg/L without me being in a relapse condition.

Obviously this is a very idealised picture, but with LCs varying between tests, each time, I still have an issue with the concept. To me, it all stems from there doesn’t appear to be an absolute FLC level that defines a relapse after one or more previous treatments. So if a limit was set at say 1000 mg/L then everyone would clearly understand this, if no other physical problems existed. Obviously if a patients LC level was in the tens of thousands (like mine was) then it’s pretty obvious that something needs urgently doing. But I suspect there are many patients with LC levels from 26 to say 1000 that wonder if new treatment is necessary? If anyone has discovered this holy grail LC number that defines a relapse, please could they say.

Very best regards,

peter

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