[fozzParticipant]

Hi all, I haven’t been on here for a while as I’ve tried to keep busy and positive. I had a diagnosis of MGUS in January following BMB which showed .77 % plasma cells of which 79% have neoplasia markers and skeletal survey showed no convincing lyric lesions. Then out of the blue I got the mother of s kidney infections and my gp suggested I phoned the myeloma nurse, she spoke to prof cook who requested repeat bloods which have shown my paraprotein has gone up from 9g/l in December to 13g/l now, IgA lambda. Do you think that’s a big jump or just normal fluctuation? I’ve phoned the myeloma nurse and waiting for her to ring me back but meanwhile worrying myself stupid!

Thanks

Kath. X

[iangParticipant]

Hi Kath

I haven’t got MGUS, but the Myeloma UK infosheet about it, which can be downloaded here

http://www.myeloma.org.uk/information/myeloma-uk-publications-list/other-related-conditions/mgus-infosheet/

says, in the “How is MGUS managed?” section: “Paraprotein levels can rise and fall in MGUS – this is normal. However, any steady increase in paraprotein level, or development of new symptoms, requires further tests to investigate whether MGUS has progressed to myeloma.”

There will also be a margin of error for each measurement.

So I suspect there is nothing to worry about yet. You need more than two rising measurements before you can describe the trend as a “steady increase”. Your paraprotein level is also well below the 30g/L upper limit that’s used for MGUS diagnosis.

Take care

Ian

[fozzParticipant]

Thanks Ian. It’s the waiting game that’s hard, the waiting to see if it goes up again and the limbo land of will it or won’t it. I’m happy it’s MGUS and nothing more but there’s just always that possibility of it progressing. I just need to get my head round it which was going ok until this jump in the levels. Now I’m waiting to see what prof cook says and hoping it doesn’t jump up again. Kath. Xx

[yvonneseParticipant]

Hi Kath,

I am new to this site and know just how you feel. I was diagnosed with MGUS last May and have had regular blood tests since and been reviewed by Haematologist regularly. My initial IgA level when found last May was 11 which went up to 13 by time I’d had my bone marrow biopsies, etc. It then went down to 12 then 10 but had gone back up to 11 at end of December. My next visit is 4th March so I am starting to feel a little edgy again. So as I an says it can go up and down….its when it keeps going up that us the problem. It is something that is always at back of my mind and it is difficult to explain to other people how you feel. Hopefully we will be okay and remain stable…..but there’s always that “what if” feeling so I empathise with you totally. We must try and remain positive.

Take care

Yvonne x

[docmikeParticipant]

Hi Kath and Yvonne
Just to confirm the papaprotein levels can fluctuate a bit by one or two each visit ;but a sequential rise at each vist is more significant and this best assessed by more frequent and shorter interval testing (4 or2 weeks).
I know this from personal experiance over the last 10 months and am having a bm today and pet scan tommorrow .(mri SPINE,half skeletal survey ok recently )
Kath ,Your BMB result does puts you at higher risk Im afraid but not everyone with high risk progresses.
Best wishes Mike

[docmikeParticipant]

Hi kath,
ERRor BMB plasma cells 1% (?0.77%) not 77%
Just read you r other thread on newcomers !!
Apologies Mike

[Author]

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