This topic contains 8 replies, has 5 voices, and was last updated by 
hi, I have light chain myeloma, my lamba was 6120 when I was diagnosed, after 6 rounds of chemo it is now 128 which my haematologist is very happy with. Is this sort of myeloma more serious than those that have both heavy and light chains?
Hi,
Your clinical team are probably the best people to advice but in the meantime why not have a word with one of the nurses on the Myeloma UK Helpline. They are really friendly and very knowledgeable. There may also be something in booklet form which may be of interest.
Hope this helps.
David
Hi Kitson
I too have lambda light chain myeloma. It is more troublesome from the kidney point of view. Lambda flc are a little bigger than kappa flc so can block the filters in the kidneys resulting in kidney damage. My flc were 6900 when I was diagnosed, my creatinine was 241 and I was in acute renal failure. Drink plenty at least 3 litres a day I have been advised. Hope this helps.
Hi, I was diagnosed with light chain myeloma yesterday and after seeing the posts I am a bit non-plussed with all the terminology and info. I am waiting for an appointment with the haematologist. Will they give me the information and levels etc when I meet them? All a bit confusing and mind blowing. I had no symptoms but it was found through a scan after I had a colostomy. However, I have had back pain for a long time, could this be from myeloma? As you can see, I am a. It like a rabbit in headlights.
Hello Kitson, yes me too. In Jun ’15 I was diagnosed with lambda FLC – at a level of > 10,000. Crazy thing was, I felt reasonably ok, apart from the food poisoning from eating fish in Dorset, that admitted me into hospital for 11 days! But a few months of VTD saw the nasties crashing to less than 20. Great result the Drs said!
The lambda form can be particularly nasty to kidneys. It looks from my menu that I can’t download a Myeloma UK Infoguide to you. It’s called “Myeloma and the kidney”. And you should be able to order it/download from this excellent www. My version is published Oct 13, and that’s what I’m reading from. Not being a medical person, and in the meantime before you get hold of a copy, I’m quoting from this version, but I’ve had to reduce/paraphrase the text… Hope it helps:
P9/10: Up to 20% of MM patients have some degree of kidney disease, and another 40% will develop k disease at some point.
Abnormal proteins produced by MM can damage k’s by blocking them.
Full proteins (heavy and light chains – paraproteins PPs) are produced by MM. In about 20% of patients only FLCs are produced. FLCs are small enough to pass thru’ the k and into the tubles. Here they often combine with a certain other protein (Tamm Horsfall) – this can cause big difficulties.
In my case I produce no PPs, only LFLCs).
P11. Try and drink 2/3 litres of fluid a day (your previous poster was dead right!) Back to this post.
Creatinine is a very useful measure of K performance, and so to some extent is eGFR, but pse have be a bit wary regarding the latter. I know of two consultants that employ upmost caution when interpreting eGFR results. And another that won’t use it at all unless creatinine is in the late hundreds or more. I can go into the details of eGFR inaccuracies if you really want me to, but it would be a long post, detailed and you’d probably get bored half way thru’ I have an Hons Deg in Physics, and it took me a while to get to grips with the error measurements. I would much rather you look into it yourself and be happy with what you discover.
At FLCs > 10, 000, my creatinine was thru’ the roof, but during traetment this also reduced dramatically. That’s the good news. The bad news is that it never recovered to pre-MM levels. So any future degradations will be from a plateau base that isn’t perfect. ‘Fraid that’s the way it is.
As your previous poster said, pse speak to the nurses on this. In my humble opinion they are brilliant. Also, PSE CHECK all I’ve said above – I’m no medical person and pse be confident that the medical advice you get from your nurses/consultants is understandable and you ‘GET-IT’.
Good luck,
Peter
Hello Peter
I am a physicist also ( wonder if there is any connection ) and have been through a similar process of thinking about levels of accuracy, calibration and limits of detection for the measurement of paraprotein levels. It does make me wonder when results are sometimes quoted to two decimal places and patients get worried if it has gone up by 0.01 or 0.02 – any thoughts?
I am aware that in our area bloods are from time to time sent to different labs so this must inevitably introduce a degree of bias and uncertainty.
The best advice may be to leave it to the medical experts to interpret which after all is their job!
Hope this helps.
David S
Hi David, it may seem that I’m a bit cautious regarding blood test (bt) results, but I had many years working with instrumentation, often for peaceful applications, and sometimes not so (and in this latter case, I can assure you there is little room for measurement errors being out of spec – as you can imagine).
I am being treated for MM in one trust. I was being treated for a prostate ‘wobbly’ in another. Obviously a bit difficult, especially since the two trusts’ data systems didn’t talk to each other. So I moved my prostate investigations to the MM trust. I saw the new prostate consultant, and I took my latest bt psa results with me. I should say that my previous trust was in special measures. My new consultant didn’t want to accept previous bt results and said he trusted his own lab, wrote out the form, and sent me off. You can draw your own conclusions… In my humble opinion my current MM hematology department has brilliant, professional Drs. And when two of them have caution regarding eFGR use (details in previous post), and another won’t use it (eFGR cannot be used for drug dose planning because of its structure), then I obviously accept their views.
Yes calibration is an issue. I would love to visit a phlebotomy centre and see tests, but health and safety and contamination aspects rule it out – and quite rightly, unfortunately. I think that modern bt eqpt is computer controlled, but with some interpretation being necessary by the analyst. So software updates, human interpretation, regular calibration, linearity of measurement system, transport of samples from the location where you have your bt taken to the centre, temperature of the sample, length of time before analysis is done, contamination, and correctly entering of final data (probably done automatically) may be a problem. Having said that, and my view, the NHS is VERY thorough, and I wouldn’t be at all surprised that these points have already been considered and dealt with at high management/technical level.
And obviously no one can ask a busy consultant/registrar/GP to look at error bands in any bt result. It’s impossible and completely unnecessary. The NHS take account a lot of thsi by looking at trends, or doing quick repeat tests. So for example, when I had a bt for T2 diabetes, before going onto long term medication I had a repeat test. That was some years ago. And here is the rub – I can’t remember my exact figures (or units), but the sugar limit was 7.0, my initial reading was about 7.2. The second was about the same. The nurse told me I had T2, and put me on a lifetime course of Metformin. Problem is if the error band is plus or minus 2, then my true results lie in the range 5.2 – 9.2, and the limit for treatment is 7.0. Subsequently I don’t have T2, no idea why, could be loss of weight due to MM and medication, no one will ever know. My problem is where a bt result nudges against a level that promotes treatment.
I met a very great young prostate registrar (just finished training), very approachable and thorough. He had a cancellation, so we got talking – he asked me about my background over a cup of coffee (and biscuits!). I can’t remember my bt psa reading, but, (ignoring units), let’s say it was 10.1234 – I asked him how accurate it was? “Oh!”, he said, “it’s very accurate, there’s at least 4 places of decimals!” I never replied, but of course if he total accuracy is +/- 2 units, then the true reading is in the range 8.1234 to 12.1234, so quoting 4 places of decimals on a presented value of 10.1234 is daft.
The Americans are well informed and quite neurotic regarding measurements. There’s many more thousands of them with MM than in the UK, so there’s obviously many more bt’s. So it’s not surprising that there’s many more ‘laboma’s’ and these are declared and dealt with.
Peter
Kitson,
When I said that I looked on the menu and couldn’t find an ‘attachment’ button – unfortunately, I never looked at the bottom of the panel – if you still want the Kidney Infoguide pse say.
Peter
Dear Morganchick
There are two types of light chain myeloma – kappa and lambda. Ask your consultant which one you have. Also, take note of the kappa/lambda ratio (this is important) as when this goes outside of the normal range this signifies active myeloma. Sometimes both light chains can be elevated, but the ratio remains normal, this can be due to chronic kidney disease and does not signify disease progression. It is very important that you drink plenty and I have been told to avoid Ibuprofen as this can interfere with kidney function. However I am not a doctor nor medically trained so do not know for certain if this is correct. I believe lambda light chains are slightly larger than kappa light chains but both types can get blocked in the filters within the kidneys which impairs kidney function. I know of several patients who were diagnosed with acute kidney injury due to myeloma rather than through bone pain. However, bone pain usually in the spine, pelvis, skull and long bones can signify myeloma. CRAB features (Calcium (elevated levels in the blood) Renal (impairment, elevated creatinine etc) Anaemia (low levels of haemoglobin) and Bones (lesions) are used to help diagnose and stage myeloma. With light chain myeloma diagnosis can be made by the presence of Bence Jones protein in the urine. There is usually no M-spike (monoclonal paraprotein) present in the serum with light chain disease. However you will probably come across the term M-spike and this is present in intact immunoglobulin disease eg IgG kappa, IgG lambda etc. the higher the paraprotein the more disease is on board. I hope this helps you a little bit more to understand some aspects of myeloma.
kind regards
The topic ‘Light chain myeloma’ is closed to new replies.
