Just been diagnosed with smouldering myeloma

Hi,

I am little confused as I have recently been diagnosed with Monoclonal gammopathy of unknown significance (MGUS)/ smouldering myeloma.

Just had second set of blood tests and I am confused by the results.

My readings are IgA paraprotien

Bone marrow 10 -20% plasma cells

High risk cytogenetics

My consultant was only a phone call not face to face.

Could anyone help with what these results mean please.

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Hi there

I will link myeloma uk upload here

From myeloma Uk

“If a monoclonal band is present, most laboratories will automatically perform immunofixation to define the lg class (IgG, IgA and rarely IgM, D or E) and light chain type (kappa or lambda). Defining the Ig class early can help direct future investigations.”

For example it looks like your IGA

I have myeloma and I am IGG

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Hi @Glennie and welcome to the forum.

I often have more questions following an appointment and blood results can be so confusing and difficult to interpret.

Others will be able to share their experiences. However, I would say this is definitely a question for your medical team. Did you have the opportunity to ask any questions or was you assigned a clinical nurse specialist who you could contact to find out more?

Nichola

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Thankyou for replying

No I was told everything was OK and I would have another blood test in April.

These results were in a letter sent to my gp.

I have asked to speak to my gp about this and had no reply.

Just worried this will progress to myeloma.

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Hi again.

Definitely keep on at your GP so you can discuss this further. It may also be worth calling the hospital to see if they have a clinical nurse specialist that you can talk to.

I hope you get to speak to somebody soon. Please keep us updated on how you get on.

Nichola

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Hello @Glennie

Thank you for your post and welcome to our forum.

We are sorry to hear about your recent diagnosis of Monoclonal gammopathy of unknown significance (MGUS) / Smouldering Myeloma. We can imagine this is an overwhelming time for you.

It sounds like it may be good to have a face to face appointment to discuss all of this further in detail and have the opportunity to ask questions etc. Which the team should be able to offer to you.

We do have some information on Monoclonal gammopathy of unknown significance (MGUS) What is MGUS | Blood Cancer UK as well as Smouldering Myeloma - Smouldering myeloma | Blood Cancer UK as stated on this page:

‘In smouldering myeloma (sometimes called asymptomatic myeloma), the level of paraproteins and light chains is lower than in active myeloma, but higher than in Monoclonal gammopathy of unknown significance (MGUS).

If you are diagnosed with smouldering myeloma, you won’t usually need treatment straight away. You will have regular check-ups so your hospital team can monitor whether the myeloma is changing and becoming active.’

Your consultant/ haematology team will be able to share what your results mean specifically for you as results are assessed on an individual basis. As Nichola has suggested it could be a good idea to call your team and ask if you have a clinical nurse specialist so that you can have a face to face appointment with them, or with your haematologist to help clarify what your results mean and a plan going forward.

I can also see that 2DB has kindly shared our colleagues link to their infosheet which is a really useful resource.

Should you wish to discuss this with one of our nurses, please get in touch on 0808 2080 888.

Take care & warm wishes,

Emma (support services nurse)

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Thankyou for the link it was very explanatory.

Phoned my gp and hoping she will come back to me.

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No opportunity and have not been assigned a clinical nurse. My consultant is very nice but says nothing to worry about will repeat in 6 months.

We are in Suffolk don’t know if that makes any difference.

Thankyou for helping

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