I’ve recently been diagnosed with monoclonal gammopathy of unknown significance (MGUS) with borderline Light Chains. I have my first appointment with my doctor tomorrow but I’m frightened that because Light Chains are involved does it means that it is more serious and fatal.
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Hi @Suan1952 a great big welcome, I know I was in shock for a long time after I was diagnosed.
I attach a copy of the Blood Cancer UK information on monoclonal gammopathy of unknown significance (MGUS)
MGUS – monoclonal gammopathy of undetermined significance | Blood Cancer UK
What I would suggest is that you write down all the questions that you ask in your post and other fears, questions and practicalities and ask your doctor tomorrow and ensure you get answers that you can understand as they know your whole medical history.
Also let your doctor know what symptom you might have and their severity.
Someone might be able to share their experiences
Please do let us know how you get on and I also look forward to hearing more about you.
Really look after yourself and please do keep posting.
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Thank you Erica, it’s reassuring to be able to talk to others in the same position so thank you for your reply. I will definitely let you know how I get on. I have made a list x
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Hi @Suan1952,welcome to the forum. @Erica has given good advice with a link to the information for the BCUK monoclonal gammopathy of unknown significance (MGUS) info.
I was diagnosed with monoclonal gammopathy of unknown significance (MGUS) in 2020 and have gained knowledge and help since from BCUK Nurses ,booklets and the forum .I am posting a link from the Myeloma.org.uk they have a Nurses support line too.
Website.Monoclonal Gammopathy of Undetermined Significance (MGUS) Infosheet - Myeloma UK
which I found very useful plus they have an monoclonal gammopathy of unknown significance (MGUS) diary if you want to record your results.
I didnt have a recordable light chain at first but now I have ,it is an abnormal ratio and High but not alarming .
I have blood tests every four months,monitored by my GP as per instruction from the Haematologist.
They are mainly watching my heavy chain IgG Kappa but If my kappa:Lambda light chain ratio gets above 9.00 I will be seen by the Haematologist.
@Suan1952 I wish you well for your appointment tomorrow ,with your list .It is all a bit mind blowing at first but get as much info as you can it will help put things in perspective .
Bannanacake
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Hi @Suan1952
I’m linking the GP guide to monoclonal gammopathy of unknown significance (MGUS) that maybe helpful for you and may answer some questions you may have or help you to list questions you will have
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Hi Erica, sorry I haven’t replied but I couldn’t find the link to my post!
I have to go for another Myeloma Screening in April to see if anything has changed. I feel a lot calmer now but I am having the most dreadful sweats in my head and shoulders which is beginning to seriously impact on my daily life. It’s very distressing, I’ve had these sweats for quite a few years but not as bad as they are now, being 72 I would not have thought it would be hormones? Does anyone else find they are having the same problem? Thanks Sue
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Hi @Suan1952
Have you mentioned them to whoever is keeping an eye on your monoclonal gammopathy of unknown significance (MGUS)?
Anxiety and stress can make night sweats worse I find and so can being tired and eating too much chocolate and sweet things would you believe and if I don’t drink enough water
I was thrown into menopause at 49 due to chemotherapy
My consultant has said mine are probably hormonal
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I have mentioned it to various GPs over the years, it’s funny but when I went through ‘the change’ I had no swears, night or otherwise but over the past 15 years it has steadily got worse to the point that it’s now affecting my entire life!
I’m the only person walking around in a T shirt when it’s snowing! I just wondered if the sudden increase in these sweats could be caused by monoclonal gammopathy of unknown significance (MGUS), I suppose I’m fearful because I have heard that increased sweating can be a sign of an underlying cancer. Sue
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Hi Bannanacake, thanks for taking the time to reply, my figures were, Serum Kappa: Lanbda Light Chain was 2.20 in October last year and I’m due more tests in March this year. The Kappa Light Chain was 20.91 mg/L and the Serum Lambda Light Chain was 9.51 mg/L.
I have to admit all these figures do confuse me I’m afraid!
To be honest we are thinking of changing our doctors because our old doctors have now retired and although this doctor was the one who found the monoclonal gammopathy of unknown significance (MGUS) I’m not all that confident in him, he seems content to give more and more pills I’m on 9 a day and I’m sure I don’t need them all!
As I said my main problem at the moment is these sweats they’re driving me mad 
. Sue
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You say 9 pills has the sweating coincided with one of those at all?
I can also understand your fear around under lying cancer
You could ask your GP to do bloods for myeloma
I have copied this from myeloma uk for you about light chains
What is a free light chain ratio and why is it measured?
The light chains in antibodies come in two types – kappa (κ) and lambda (λ).
In people without myeloma, light chains are present in the blood, but the balance between kappa and lambda types (called the kappa to lambda ratio or free light chain ratio) will be fairly even.
In myeloma, the myeloma cells produce either kappa or lambda light chains only, so the level of that type will be higher, and the kappa to lambda ratio will change.
An abnormal ratio can indicate active myeloma and is considered to be as important as the kappa and lambda levels for diagnosing and monitoring myeloma
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