[fozzParticipant]

Hi all,

 

I wonder if anyone can help either to help me understand things or help stop me from worrying?

I’m 44 years of age, female and have 3 children.

 

I was diagnosed with MGUS about 7 weeks ago, my m spike was 9g/l and everything else in the bloods was normal. BMB showed less than 1% plasma cells with 77% of those with neoplastic phenotypes.

 

I started with a kidney infection 4 weeks ago and my gp suggested I rang the nurse specialist and she suggested another round of bloods. It’s the results of these bloods that have worried and confused me. My m spike has risen from 9g/l to 13g/l IgA Lambda and my free light chain ratio is now high at 0.19 with a reference range of 0.26 to 1.65. My kappa is 7.4mg/l (3.30 – 19.40) and my lambda is 39.8mg/l (5.70 – 26.30).

 

Both the bloods for the MGUS diagnosis and these recent ones show everything else is normal…kidney function, calcium etc.

 

I’m confused and worried because I understood it when they told me my diagnosis of MGUS that MGUS is benign, stable and has a low risk of progression.  I’m finding various references on the web, some say a rise in ratio means progression and others say it can me normal to have a high ratio and still be MGUS. How will they know if it’s progressing without doing another BMB and is a BMB totally reliable?

 

Sorry I’ve rambled on a bit!

 

Thanks

 

Kath

[dickbParticipant]

Suggest you talk to the Myeloma Nurses. I’ve spoken to them on several occasions and found them to be so helpful and understanding. Give them a call.

[cygnetParticipant]

Hi – I’m sorry you’re having a stressful time.

I agree with Richard though, do ring the Myeloma nurses on the Infoline – I have done several times & have found them wonderfully helpful & reassuring. I also think you should ring your nurse specialist because she can help you interpret your results &  refer to your  consultant if clarification is needed.

MGUS is a confusing diagnosis so please don’t feel you are alone in feeling bewildered & worried.  I have been researching it alot & there seem to be conflicting views about how “benign” it is but every case is different. There is loads of useful info on here but  I would also suggest looking at the Myeloma Beacon website. Mgus itself is where the stress begins I think because although we are told “good news… no treatment” & put on active monitoring it’s difficult to know what’s normal when there’s so much grey & nothing’s black & white. I hope this makes sense.

When I start stressing now I try & remember I can’t change my blood or bone marrow chemistry  – if anything stress will make me more vulnerable.  However I have learnt that there are markers for when treatment begins & very little happen that quickly so that’s what the monitoring is there for.

We’re all different but I finding the saying “Life isn’t about waiting for the storm to pass- it’s about learning to dance in the rain ” is helping me stay calm as I come to terms with where I am . ( Yes.. OK.. I drum my feet & stomp sometimes but I’m only human!!) Sometimes we all have to cry/vent/rant too. That’s difficult but this is agood place to do it 🙂

For me,tiredness seems to be my worst enemy because it distorts my perception & like you I have other medical problems which drag me down so on my GPs orders, I am trying to be kinder to myself. With three children & recovering from kidney problems ,you must be exhausted. I feel for you.

I hope this helps –

Love & hugs,

Cxx

 

 

[Anonymous]

Hi kath, give the nurses a ring and come and help me chop the hedge down that’s what I’m doing to try take my mind off next week. Our minds just race with lots of stuff but no matter how much positive is there the negative is just bounces in and over runs it all, sending hugs and sent you a message xx

[graham-cParticipant]

Hi fozz

We appear to have similar readings. In December 2014 my PP was 8.5, my kappa/lambda ratio was 0.03,  and serum free lambda light chain 159.2 and I’m still diagnosed at the MGUS stage.

I have read elsewhere that even though a SFLC level may be outside the normal range, it isn’t considered medically significant until it passes 100. Having said that it’s not unknown for people to have readings in the thousands, at which stage I’d probably need smelling salts.

I have to admit that for unknown reasons I have had problems getting results from the hospital who didn’t appear to understand that it was my legal right. It’s a sore point with me having lost a kidney to cancer and that diagnosis was withheld from me, but I don’t hold a grudge. Their original reluctance has merely meant that I have several volumes of medical notes, more than I wanted. I only require four figures, being the three I have mentioned and my eGFR (for kidney function) to give me an idea of progression.

Progression really appears to be the major guide as to how you will be treated unless your results are out of the ordinary. Of course any other illnesses or symptoms will be taken into account, and it’s hard not to associate any other problems as being down to MGUS. An example is that I have a disc in my back that occasionally slips and leaves me barely able to walk and in great pain. Having that happen alongside a diagnosis of MGUS prompts concern though I didn’t seriously believe anything had broken, otherwise I wouldn’t have walked round to my GP’s. The hospital were a little naughty but the GP prescribed some lovely painkillers and anti-inflammatories and that’s recovered now.

I’m quite physically active though I’m not short of other health issues that I try to ignore. As regards MGUS I would prefer to avoid treatment that may make me feel worse than I do now and evidence of progression in my blood results seems a fair enough way to monitor things.

Looking back at my encyclopaedia of test results I have noticed that in my original BMB it shows nucleated red blood cells at 30% which seems inordinately high. I’m due back at the hospital next month and it’s something I’ll ask about.

Even though we may have similar results, it doesn’t mean that it will affect us the same way, or that worse results will cause worse symptoms. It’s interesting but not relevant in judging how it will affect either of us.

[cygnetParticipant]

Hi Helen,

Hope all goes well with your appointment.

C xx

[Anonymous]

Thanks C, can’t wait for it to be over 3pm tomorrow can’t come soon enough but no doubt they will be running late. I just want to be able to know what’s what and then work with what ever happens it’s not knowing that’s bloody awful, will let you know tomorrow night hope I can sleep without the recurring nightmares.

hugs H xx

[Author]

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