[jensmanParticipant]

Hi everyone and thanks for the add. My name is Paul Jeffreys and I’m a full time carer for my wife Jen who was diagnosed SMM last November. She’s been having 3 monthly blood tests since diagnosis and they’ve always come back stable but today she got a letter to say that her paraproteins are 10.2g/l, her light chains were 140 and her calcium was at the high end of normal. The haematologist now wants to do 2 monthly bloods which is a little bit of a worry. Can anyone tell me what “good” numbers are and if there’s anything we can do to bring them down. Jen doesn’t take any meds for her SMM other than 2000mg of vitamin D daily, although she does take meds for other issues. Any input would be great

[leicsladParticipant]

hello paul sorry to here your wife as been diagnosed. regarding what all the numbers mean it is very difficult because it is a combination of them all.but just to put your mind at rest a little i have had 2mthly bloods 6mthly bloods and now have 3mthly bloods i am 68 years old and was diagnosed 7 years ago. my paraproteins are always 30+ but stable i have bence jones which is to do with light chains the number they tend to look at is the ratio. i do not have any medication other then adcal supplement, like your wife i have meds for other things, i do get a little over tired but not major. when i am tired i rest. i haven’t seen heamotology since lockdown i have bloods at doctors and phone appointment from hospital this works well. i try to carry on as normal, it does get you down sometimes but rise above it stay safe and well and have stanby antibiotics. take care steve.

[richfsModerator]

Hi Paul,

I’m one of the forum volunteers.

Just to agree with Steve, it’s hard to say what blood results are ‘normal’ as myeloma is a complex disease with many different forms. Individually, a patient and their family get to know the key aspects of the blood test that is pertinent to them. For me, it’s the paraprotein and IgG level.

I have a friend who was diagnosed with smouldering myeloma 3 years ago, her paraprotein levels have been stable around 28g/l which is twice as high as the level I was at when I needed to have a second line of treatment for my active myeloma. It’s also just below the 30g/l which tends to be the level at which myeloma is diagnosed. So, you can have stable, asymptomatic myeloma with quite a high paraprotein level.

Myeloma is a complex disease and there are many factors, it’s very individual to each of us, so do speak to your team and ask them detailed questions about what they are monitoring and at what point they would be considering treatment.

Being a nerd, I keep a graph of my paraprotein levels, they started rising very gradually a year post treatment, but then another year later plateaued for almost another year before more treatment was needed.

Best wishes to you and Jen, do reach out to us on the forum, we’re all here for you,
Rich 👍

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