[sandy-4Participant]

I was diagnosed in December 2020. I’m confused and wanting some more information on the Pp and light chains. At what level is Myeloma start from?

[mulberryParticipant]

Hi Sandy-4, sorry you find yourself here with us, the exclusive club no one wanted to belong to…
Pps, paraproteins, shouldn’t exist at all, they are clone proteins which replicate themselves but don’t die. Any level of pp shows there is a problem, but not necessarily a problem that needs, or that the patient would benefit from, being treated.
Just to complicate matters the pp level that calls for treatment will vary from patient to patient, but a good percentage of the population have, unbeknownst to them, a constant low level of paraproteins. This is called MGUS, monoclonal gammopathy of unknown significance. If you have a diagnosis of MGUS you will be very unlucky if it does develop into full blown myeloma.
Everyone has a certain level of light chains. These are broken off pieces of antibody. Antibodies are made up of 2 heavy chains (Immunoglobulin G, A, M, D or E- or IgG, IgA, IgM, IgD, IgE) and 2 light chains kappa and lambda.
Myeloma can come in a variety of subtypes depending on what your abnormal plasma cells do. Most of us have IgG kappa myeloma or IgG lambda myeloma, some have IgA kappa myeloma or IgA lambda myeloma, fewer have IgD kappa myeloma or IgD lambda myeloma. (IgM disease is known as a separate disease) Some of us don’t make paraproteins at all but still have abnormal plasma cells making damaging numbers of light chains, these are known as Kappa light chain myeloma and lambda light chain myeloma. Just to complicate things a little further a small number of us have Non secretory myeloma where the abnormal plasma cells don’t make either paraproteins nor light chains, but still proliferate and damage the bone marrow and organs in the same way as other forms of myeloma. (This type of myeloma can only be measured by bone marrow biopsy). I hope I haven’t made it seem even more complicated!
Myeloma UK has various online leaflets that are very helpful in explaining myeloma and treatment. It is a steep learning curve initially, but there are now good treatments available which enable most of us to get back to a good quality of life once the myeloma is under control (which does usually take about 9 months)

[sandy-4Participant]

Thank you Mullberry for your reply. Your reply is very informative. I believe l have IgG Kappa paraprotein, In the Haematologist letter it states about my serum free light chain raised in a polyclonal fashion. Do you have any idea of what that means please?

[sandy-4Participant]

Thank you Mullberry for your reply. Your reply is very informative. I believe l have IgG Kappa paraprotein. In the Haematologist letter it states about my serum free light chain raised in a polyclonal fashion. Do you have any idea of what that means please?

[mulberryParticipant]

Light chains are usually found in higher than normal levels in myeloma when it’s diagnosed.
I’m not a doctor, your doctor or myeloma nurse will be able (& willing) to explain how this relates to you.
When I was diagnosed (I have IgG lambda myeloma) my lambda light chains alarmed me because they were 254. (The normal range for lambda light chains 5.7- 26.3 & kappa 3.3 – 19.4) However it’s the ratio of kappa to lambda light chains that is important in myeloma, it should be 0.26-1.65. Myeloma patients can have light chains in the 10s of 1000s.
Since diagnosis I’ve not had an issue with light chains, they went back down into normal ratio after my first cycle of treatment- ie within a month.
Hope this helps.

[mulberryParticipant]

Just reread your query
“polyclonal” is normal, good, produced by normal healthy immunoglobulins.
It’s monoclonal that are the worrying ones!

[sandy-4Participant]

Thank you Mullberry once again for your information.

I was diagnose over the phone last month with a Locum Consultant Haematoogist. All the consultant keep saying was i need to be watched every 4-6 months via the hospital and it’s benign. I recieved a letter from the Haematologist stating alot of facts that l didn’t understand. There’s no phone number or email adrress of the person l spoke with, to contact them. I called my local Gp for help and advice and they really didn’t understand anything regardiing what MGUS is. I also rung the hospital and asked to be put through to the Haematology department. I was told to leave a message and someone will return my call. I am still waiting. So I have been trying to learn about it myself. Hopefully when I have another appointment I will be able to ask question and receive answers.

My letter states that my K 1.9 mg/L and L at 21.8 mg/L with a normal Kappa/lambda ratio of 11.5.

What is mg/L stand for please?

[mulberryParticipant]

Mg/l is milligrammes per litre.

I’m sorry you’ve had such difficulties getting information, I’m sure that this is because of the pandemic pressure on NHS. It may be helpful to talk to lovely Ellen or one of the other myeloma UK staff.

The good thing is that your diagnosis is MGUS, which is very much a precancerous state. The chance of it developing into full blown myeloma is 1% a year, rising to 5% a year for older people (I think over 80s). MGUS itself (by definition) doesn’t cause you any harm, but multiple myeloma (hence the multiple) can have a variety of damaging effects, most commonly on normal bone processes causing lesions & fractures, kidney problems, anaemia, problems with calcium levels and the immune system.
To avoid these ‘end organ damage’s you will have regular blood tests to make sure that the MGUS is staying stable or only marginally rising, that way any damage to your bones, kidneys etc can be avoided. (By having treatment if necessary).

I too have found that my GP knows little about this condition (he was totally out of date about life expectancy when I was diagnosed), but myeloma is classified as a rare disease, so perhaps not so surprising. Myeloma UK really is a most helpful organisation, so do use them.

I hope you continue in MGUS. (There is a long term study being done in Iceland to find out the true proportion of people with MGUS in an entire population, and this may show that even fewer than we now think, develop myeloma.

[sandy-4Participant]

Thank you Mullberry for taking the time to explain this to me. I really do appreciate all the information that you have given me today.

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