[graham-cParticipant]

I won’t waffle as I am liable to do. I’ll simply present my own situation and an unusual set of results that have me puzzled.

DIAGNOSIS

I am MGUS at an unremarkable level and have been for some years, apart from a recent blip that has gone back to normal levels. I am now to be reviewed at six monthly intervals with a phone contact to advise me of my next results and I’m fine with that. I don’t have any symptoms that I can ascribe to Myeloma and I would not want to queue jump or seek attention I don’t require.

PROGNOSIS

My kappa/lambda ratio has always been abnormal and this is my first contact with the concept of a result suggesting a worse prognosis. Still, I simply assumed this to be part and parcel of MGUS and gave it no further thought.

At a recent appointment the doctor had said some things that didn’t make complete sense, but I have learned to be cautious and didn’t say anything. In writing to my GP to update her the doctor at the hospital has included abnormal readings and these are

LDH – abnormal

Beta-2 microglobulin – abnormal

CRP – 14

Using reputable sources to get info on those tests

The LDH test is mainly used to help identify the location and severity of tissue damage in the body. It’s also sometimes used to monitor how far certain conditions have progressed. It is used to follow-up cancer (especially lymphoma) patients, as cancer cells have a high rate of turnover with destroyed cells leading to an elevated LDH activity.

It isn’t a myeloma specific test.

Up-regulation of β2M is observed in haematological malignancy (principally Multiple  myeloma) and may facilitate prognostic information as a function of deterioration in (kidney) Glomerular function

Beta-2 microglobulin (B2M) test is used as a tumour marker for some blood cell cancers. It is not diagnostic for a specific disease, but it has been associated with the amount of cancer present (tumour burden) and more importantly can give the healthcare professional additional information about someone’s likely prognosis

It isn’t a myeloma specific test.

CRP – To identify the presence of inflammation, to determine its severity, and to monitor response to treatment. When your doctor suspects that you might be suffering from an inflammatory disorder (as with certain types of arthritis and autoimmune disorders or inflammatory bowel disease) or to check for the possibility of infection;

It isn’t a myeloma specific test.

The dilemma for me being that the diagnostic tests related to myeloma/MGUS are unarguably low level, and yet the non-specific prognostic tests are registering something significant, apparently. It is contradictory to have a low disease level with a poor prognosis.

I’m not going to get excite by it, but I’m not going to ignore it either. I wonder, if by mentioning to my GP, the hospital doctor is offloading responsibility to her. Just a thought.

Are they picking something else up ? It had caught me completely by surprise when I was asked if I was HIV positive at a previous appointment. I wasn’t offended and I was pretty certain I wasn’t and I was tested for it and am all clear. When I asked about it subsequently the doctor was evasive but I have read that one of those results can be elevated with HIV.

I do feel ill a lot of the time, but not with symptoms that I can put down to myeloma. All I can do is wait and see if it comes out into the open, either by worsening symptoms or some other blood results pointing to the source. It seems inconceivable that those prognostic results can be related to my low level MGUS.

I must admit that when my MGUS had a recent blip and my PP’s rose unexpectedly (but not inordinately) I couldn’t understand the doctor’s pessimism. I assume that alongside those prognostic results they looked much worse than the picture I had.

I wouldn’t want the hospital to go chasing after whatever may be prompting the abnormal results so I’ll wait for February 2017 and my next results and make a Subject Access Request and get some precise figures over a period of time.

I told you, I do waffle.

• This topic was modified 8 years, 2 months ago by  graham-c.
• This topic was modified 8 years, 2 months ago by  graham-c.

[debbiegParticipant]

Dear Graham

Thank you for posting on the Myeloma UK forum.  My name is Debbie and I am one of the Myeloma Information Specialists here at Myeloma UK.  I am sorry that no-one has responded to your post to date.

As you correctly note LDH, B2M and CRP are not diagnostic tests in their own right (for myeloma or any other conditions).  Instead they might be described as indicators of a general systemic (affecting a whole system, or whole body) abnormality.

As you have been diagnosed with MGUS your doctor is monitoring you for signs and symptoms that could indicate a progression of your MGUS to myeloma.  That is not to suggest that a progression is inevitable – as I am sure you are aware only a small percentage of MGUS patients go on to develop myeloma.

When a patient is diagnosed with myeloma, as you also note, the levels of these particular blood results are considered in combination with other findings, when the doctor is assessing the patient’s individual presentation of myeloma and their prognosis.

If you would like to talk things through, please feel free to call the Myeloma Infoline on 0800 980 3332, or alternatively you can email directly to askthenurse@myeloma.org.uk

With best wishes

Debbie

[graham-cParticipant]

Many thanks for your reply Debbie.

I have no problem with the hospital, doctor or the diagnosis of my low level MGUS. I only mentioned it because it was an interesting anomaly and one that will have future implications for me, if only meaning that prognostically they are of no value in my case.

The more relevant point to me personally, that isn’t within the scope of haematology or the condition for which I am an out-patient, is whether or not it refers to something else. I don’t for one second believe that I am going to discover anything that will be diagnostic and, many of the alternative conditions for which these tests are relevant, are also haematological but the tests are indicative of something. For many years I have had a condition for which I have never received a diagnosis and which, though unspecific, can make me feel very unwell. When I had my blood test I was having one of those spells.

I’ll get details of the level of the two results which are abnormal but not quoted simply so that I can track them in the future. Until whatever it is afflicting me reveals itself, I’ll just have to put up with it.

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