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Hi all – I’m new to all this and hoping for a bit of advice/clarity. I’ve been anemic off and on for past two years. Good atm after an iron infusion in July (after a week in hospital with food poisoning. Any way this led to abdo CT’s finding 2 lesions on spine. IgG has been slightly elevated for 18mths Beta 2 microglobulin is 3.1. Last blood test showed “monoclonal banding of undetermined significance on polyclonal background”. I’m having a ct skeletal survey next week, all new bloods and urine and appointment with haemotologist in six weeks. When I saw her this week she gave me a booklet on myeloma highlighting the MGUS section and I understand all this. My calcium snd kidneys are good. My question is do I have MGUS or do you think she will wait until these test results to diagnose? Thx Ruth
Hi Ruth
It sounds as if you are having a proper full, non urgent assessment of your monoclonal paraproteins.
It has long been known that some people have a pre cancerous condition called MGUS Monoclonal Gammopathy of Unknown Significance and live perfectly long and healthy lives without it progressing. A long term study of the whole population over age 40 in Iceland (called IStopMM) is demonstrating that this is more common than previously realised, as it is only found incidentally.
However it’s now believed that everyone diagnosed with multiple myeloma, or it’s immediate precursor form Smouldering Myeloma, will have had MGUS first. And it is possible to develop Chronic lymphocytic leukaemia (CLL) rather than myeloma from MGUS.
This is a period of significant improvement in treatment for myeloma, so there is sometimes a risk/benefit assessment to be made about when to start treatment. In any case, only 1% of MGUS patients a year reach levels of Monoclonal Gammopathy that are going to cause end organ damage and therefore require treatment.
Currently you will be being assessed to see if you have any significant “CRAB” features, that is high Calcium in your blood, Renal (kidney) damage, significant levels of Anaemia or Bone lesions.
Any of these are significant findings, but only bone lesions actually trigger treatment unless either you have a high paraprotein level (with IgG this is over 30g/l) (some people have different immunoglobulins causing problems or no paraproteins but light chains). If you have a fairly high level of paraproteins this should or could also trigger a Bone Marrow biopsy being done to estimate the total infiltration in your bone marrow. A figure of 60% or greater of myeloma cells in your bone marrow would trigger a diagnosis of active myeloma.
The beta 2 microglobulin level is used in staging myeloma, and is often raised, but at your level doesn’t seem exceptional to me as another patient.
I would really warn you against Google searches at this stage. So much information especially about prognosis is seriously out of date. Reliable information can be found on the Myeloma UK website, Healthtree Myeloma (a US site set up by a patient) and International Myeloma Foundation. Best in terms of NHS treatments is if course the Myeloma UK site.
The myeloma patient who started our local support group has now entered her 20th year of living with myeloma, and although this isn’t yet usual, with the latest treatments becoming available, it will become more common.
Best wishes
Jane
Thanks for taking the time to comment Jane. I appreciate your advice about over googling. I’m fairly comfortable with the information I have. My only confusion is about MGUSdiagnosis. My GP referred me to haemotoligist early 2022 after high protein and anaemia. After regular follow up for 12 months she was satisfied that not MGUS etc. After being referred back this month and monoclonal banding now indicated she has give. Me a brochure on myeloma (highlighting the MGUS section) and another he brouchure on joining th3 Myelome & Related Disease Registry – I’m in Australia. I guess my question here is ….. if my skeletal scan is clear and I have no other CRAB markers is the presence of monoclonal banding leaving me a diagnosis of MGUS. Thanks Ruth
The complication is that myeloma is not really one disease. Myeloma is really an umbrella term for a range of very rare plasma cell cancers and pre cancers, with somewhat different, but overlapping presentations. Not all patients with active myeloma have skeletal lesions, so not having lesions does not preclude the diagnosis.Eg I was diagnosed over 5 years ago and have not had any bone lesions despite having active myeloma. You do have some anaemia which is relevant but if it is not very significantly below the normal range, drs do not seem to worry about it.
I’m not sure why your Dr would have ruled out MGUS if you still had an ‘m’ spike showing on an electrophoresis test, since a normal result would show no ‘m’ spike or Monoclonal band, but would be polyclonal. Any monoclonal band is abberant, hence MGUS .
Try not to worry if you are (re) diagnosed with MGUS. Most patients stay in that state, for whatever reason their immune systems are able to control cancer cell numbers down to a low, stable level, avoiding any organ damage.
With your awareness of possible symptoms of myeloma (those CRAB symptoms especially) you will be alert should you develop issues in one of these areas, and you should continue to be monitored with blood tests fairly regularly (in the UK this is usually on a reducing scale if a patient remains stable over years).
The bottom line seems to me (a patient, not medically trained) that if you have monoclonal paraprotein present, but no physiological damage, & not at a high level with immediate risk of such damage, then that is diagnosed as MGUS.
That’s what I was thinking but good to get someone else’s thoughts. Thanjs
Little update. I’m still waiting for my appointment with my haemotologist in two weeks but I’ve just seen the results of my urine test which read: Paraprotein detected – kappa free light chain 0.01 g/l.
Interestingly I went back and saw that my urine test from February 2022 also had the same results except the Kappa flc was <0.01 g/l. This test was ordered by my GP and I’m not sure that my haemotologist got a copy at the time.
Question – does that seem to mean that I’ve had MGUS since at least February 2022.
As a patient I would think so. 0.01g/l is a very, very low level. Although there are exceptions, myeloma does not usually do organ damage until over 30g/l.
When I looked back at some hospital tests run about 9 years before my diagnosis, when I had a completely unrelated problem, there were some marginally anomalous haematological results which makes me wonder if I’d had MGUS at that stage, although neither I nor the hospital picked up on them at the time. Actually I got diagnosed fortuously just as my myeloma became active, so I wouldn’t have been treated any earlier than I was.
MGUS usually does not progress to Myeloma and evidence from IStopMM a study of the prevalence of MGUS, Smoldering & MM in Iceland suggests MGUS is more common than previously thought.
Thanks for responding. I’m not too concerned just annoyed that this MGUS could have been diagnosed two years ago but at least it appears to be moderate. My brother has smoldering mm and has for about three years. Hopefully my MGUS stays as just that. 😊
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