[josie19Participant]

I have just been referred under 2 week rule and waiting for an appointment. I have kappa light chains of 20. I also have fatigue bone pain and kidney damage. I don’t understand what the 20 kappa light chain means. Any advice welcome I am so confused.

[kh0305Moderator]

Hi Josie,
Sorry to read that you have been referred for MM. I’m one of the volunteers on the forum. My dad was diagnosed with MM back in 2013 and please don’t worry – most of us are very confused by all of the terms, acronyms and names and not just at referral! I take a notebook to all my dad’s appointments to keep a note of any questions I want to ask, his results and any other information they give us at his consultant appointments as it can all be confusing and overwhelming, especially on top of the worry about the disease itself.

There is a very useful section here on the Myeloma UK site called ask the nurse, which has a good explanation of paraproteins and light chains: which you may find helpful. Essentially it is one of the markers that they will look at to flag up any issues and as your kappa light chains are higher than the normal range, along with the other symptoms you describe will have triggered the referral.

I found dad’s medical team really helpful in terms of explaining things and being onhand to answer questions so please don’t be afraid to ask as many questions as you need and there is also this site which has so much information plus the info line 0800 980 3332 if you need further help.
I hope your appointment comes through soon xx

[richfsModerator]

Hi Josie,

I’m sorry to hear about your symptoms, waiting for an appointment like this is a horrible thing to endure. Of course, until you have that appointment, and some tests such as a bone marrow biopsy and a PET or MRI scan, you won’t know your diagnosis, but it’s natural to look into the likely meaning.

In 2019, I was diagnosed with myeloma, following a few months of bone pain and a blood test showing a low white cell count and high protein levels. Myeloma has many sub-types, some relating to light chains and others to IgA, IgG or IgM immunoglobulins (para-proteins).

Rather than getting bogged down in the figures and uncertainty, I would just say that myeloma is a very treatable disease. After a few months of treatment where the main side-effect is fatigue, you can get back to normal life. For most of us when we’re diagnosed, it feels like a death sentence, but in fact life does return. Generally, patients expect to have some more treatment each few years, and there are many different treatment options available. So, do hold on to hope, there’s lots that can be done and you can look forward to getting back to an active and worthwhile life.

Do give the infoline a call, or reach out to us on the forum, we’re here for you and we know what a shock it is to be somewhere like this.

Best wishes,
Rich 👍

[mulberryParticipant]

Hi Josie

You will be given a complete assessment by the haematologist, including the definitive test for myeloma which is a bone marrow biopsy. This involves a needle removing a sample of bone marrow from your hip, looking for tell tale proteins & myeloma cells. The sample should be tested for certain genetic changes if myeloma cells are found.
There are a number of subtypes of myeloma, kappa light chain myeloma is one of these, but it is normal to have a certain level of kappa light chains in the blood. A normal level of kappa light chains is up to 19.4 mg per litre. However it is the ratio between the kappa light chains and lambda ones which is more significant, this should be between 0.26 & 1.65.
It is always terrifying to be told that you have been referred for a 2 week wait appointment, however some patients have light chain levels up in the many thousands when diagnosed.
Myeloma is a very individual disease, there are perhaps a billion possible variations. It is called Multiple Myeloma for very good reason, so numerous tests are required. However not everyone who is tested, even if they have certain signs of the disease, will need active treatment. There a is a pre myeloma condition called MGUS (monoclonal gammopathy of unknown significance) and an often slow, indolent type called Smoldering Myeloma. Although both conditions require monitoring, they don’t require treatment, for years, perhaps ever. I’m glad that you have found us, you may also find it helpful to talk to the helpline, I know that I found it helpful when I was waiting for my haematology appointment.

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