[kendrawParticipant]

Hey folks

I had a bmb on the 3rd Sept last year which showed a plasma cell dyscrasia of under 10%, I have an abnormal flc ratio (excess Lambda) and a positive Bence Jones urine. There was also an incidental finding of Amyloid tissue which has muddied the waters even more. A trip down to the National Amyloidosis Centre in London confirmed my organs are clear and I do not have AL Amyloidosis.

So, I am not really sure as yet what I have!!!??? Unfortunately there is no way of knowing until things kick off. NAC told me SMM and my haem consultant told me MGUS and to make things even more confusing for me, there is a possibility that I will develop Al Amyloidosis so I am watching and waiting for for signs of MM/AL Amy and indeed there is a possibility I could have
both.

I am wanting to get to grips with my flc values and wondering if anyone can please point me in the right direction? I am going to try to get a print out of my results from now on which I hope will not be hard to do. I feel if I know what I am looking for and understand this aspect it will help me in the future. What level do they need to be at before they cause damage? I think they may be causing damage already neurologically but my haem cons doesnt seem to think so.

Apparently I had no monoclonal band detected…what does this mean? Is it something to do with my disease being non-secretery?

I have values here for Ig’s as well from the NAC but no idea if they are normal or not so would be good to get a chart or something for normal values of these too. I seem to be bombarding you with questions, I am sorry but help would be very much appreciated.

Best wishes

Kay 😀

My flc’s in sept: free kappa of 9.67, free lambda of 371.39 & a ratio of 0.026 (locally)
My flc’s in oct: free kappa of 9.9, free lambda of 286 & ratio of 0.03 (NAC)

[rebeccaRParticipant]

Hi Kay,

I have IG lambda and have been told the normal ratio is between 0.26 -1.65 normal kappa 3.3 – 19.4 and lambda 5.7 – 26.3. As I am sure you have read this is a very individual disease and when it impacts on bones or kidneys is also individual but as you are being monitored rest assured it will start before damage is done. I have known some wait til 1000 before treatment has started but I am also sure there are others who have started earlier and later than this. My lambda was only at 1120 and I was at 5% kidney function when diagnosed but no bone damage – everyone is different. The important thing is you are being monitored. No M spike detected is because it is non-secretery.
Do make sure you ask your consultant everything you want to know – in the early days I took in a concealed tape recorder and a list of questions to ask. When I listened to it later I realised I had retained very little from the meeting – so this was a godsend to me. I also didn’t want to be writing everything down as it was hard enough asking all the questions. You will also find this helpline very good for answering everything or pointing you in the right direction, they are very friendly.
Good luck and stay strong,
Rebecca

Rebecc

[graham-cParticipant]

Welcome kendraw.

I can understand what you feel, though I have a more difficult time as my Haematology Department are always very reluctant to give me the results of my blood tests. I don’t understand why and it’s rather silly because it causes me to make formal legal demand on them. Let’s not discuss this.

My analogy is that abnormal blood results of the MM variety are like knowing that a visitor has been inside your house and the medical team investigate to see what the visitor has been doing there. Unless the results are extreme it is a mistake, and unnecessary, to begin any course of treatment until its known where the disease might be heading.

My results are similar to yours but how everyone is treated is different because any other health issues you have may be relevant and require earlier intervention. I can’t explain quite how I’m treated and I have an appointment with Neurology next week, though I’m not quite sure why. The foot that interested them works and doesn’t cause me pain, but he thought I should have the hernia treated that the hospital had failed to diagnose seven years ago.

I have four monthly blood tests. I believe that a FLC level above 100 is considered significant as, like some other measurements like eGFR, it is not specifically accurate, which is why they always track readings to measure the progress of the illness. Mine was 160 and lambda like yours. When it is combined with an out of range kappa/lambda ration then it is considered to be abnormal and also the result of a clonality. This is useful as FLC’s can be raised in other conditions.

I always get my FLC lambda level, kappa/lambda ratio, my eGFR and paraprotein level as I do have an M spike too. I have already lost a kidney to cancer and so I’m protective of my remaining one but my eGFR is 60 which is quite good. That is a measure of kidney efficiency.

I’m not alarmed by my readings but with a medically defined abnormal blood condition I was irritated when the Haematology Department claimed that my latest results were ‘okay’ when they were actually worse. The result of that is that I don’t trust their opinion.

I must say ‘rebeccaR’ that an FLC level of 1,000 and eGFR of 5 would scare me because FLC’s of that level will have a depressive effect on kidney efficiency.

I understand the frustration of being told you have MGUS with no clear understanding of what that means. My concern was that the next stage would be to be discharged with no explanation, which has been a common experience of mine (the hernia being an example). Now that I have established that I have a blood abnormality (by medical definition – FLC in excess of 100 and an abnormal kappa/lambda ratio) with worsening results, I can await the illness to show its hand.

You should have no problem getting your results and indeed you are entitled to know them. I have to do it the difficult way which is also awkward for the hospital, having to look up and post me results retrospectively that is how I uniquely have to do it.

In a sense it’s fortunate to detect the disease early and having been left with a hernia for seven years it’s only because the hospital was seeking to find the source of my symptoms, which they knew about all along, that my abnormal results came to light. It’s now a waiting game.

I provided a 24 hour sample for a urine electrophoresis but they lost it (honestly) and I haven’t had any tests for amyloidosis.

My next blood test is in May.

[jillsParticipant]

Hi,

Just to throw a spanner in the works – my Mum’s lambda light chains are currently at 8,800, PPs at 40 and her kidney function is fine. Since diagnosis with IgA MM in 2007 her light chains have never been below 1,000 but no problems with her kidneys so far. She is 84 and at the moment off any treatment (since August 2013) as we are ‘watching and waiting’ as her consultant says. She is very well, much better than when she was on the various drugs (she has had CTD, Velcade and RCDa).

Take care,
Jill

[graham-cParticipant]

That’s interesting to know Jill and does confuse my understanding of the illness, but we are all on separate paths determined by our own particular symptoms, reactions, health and results. I believe that FLC levels can also be raised by illnesses other than Myeloma and, having already received treatment, it may also be a factor in determining what course of action is taken.

As I’m sure you’re aware that level is awfully high and would set my anxiety levels rocketing but I’m a newcomer to this condition.

[VickiParticipant]

Hello all

Sorry I can’t offer any information on the readings, but just wanted to pop on and say good luck with any treatment. My partner Colin was diagnosed in 2011 and had an sct in November 2012.

Just wishing you all the best with a full remission or if mgus that it just smoulders in the background and doesn’t leap to life 🙂

Vicki and Colin x

[jillsParticipant]

Hi,

I know that 8,000 flc is a very high reading. Mum is monitored every 6 weeks by the consultant who expresses his surprise at the fact that her kidney function has remained perfectly fine. I guess as you say everyone is different. I worry less now than I did at first about the numbers and more about her quality of life as the consultant and I agree that as long as she is well and enjoying life without symptoms then at 84 she doesn’t need to have treatment despite the numbers. Her underlying health has always been good and she doesn’t have any bone damage either. However, I am sure it would be very different if she was younger and able to stand a stronger type of treatment like Bendamustine but even on Revlimid she become unwell with anaemia and low blood counts – since she stopped these have all bounced back to normal.
I hope she continues to do well but at some stage I know she will need more drugs!
Jill

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