[katiep59Participant]

I have recently had urine tests which show bence jones proteins and other m proteins which were followed up with bloods which were found to be abnormal so I’ve been referred on a cancer pathway to haematology. My bloods were as follows

SERUM FREE LIGHT CHAINS
Serum kappa light chain level 90.15 mg/L [11.3 – 27.6]; Above high reference limit
Serum lambda light chain level 9.47 mg/L [10.3 – 24.4]; Below low reference limit
Serum kappa:lambda light chain ratio 9.52 ratio [0.99 – 1.8]; Above high reference limit

Can anyone shed any light on what this might mean and what tests come next with the hospital?

Thanks

[rabbitParticipant]

Hi Katiep59 and welcome to the forum.

The fact that you have joined a myeloma forum to ask suggests that you suspect that you have myeloma or something related to it.

I must emphasise that (to the best of my knowledge) everyone on this forum is either a patient or a loved one of a patient, not anyone with a medical background.

I fed the data that you gave into Chat-GPT. Its response is:

“What this can be associated with

Abnormal serum free light chains are commonly linked to conditions involving plasma cells, such as:
Monoclonal gammopathy of undetermined significance (a relatively common, often stable condition)
Multiple myeloma
Light chain amyloidosis
Other plasma cell or lymphoproliferative disorders

That said, this result alone does not diagnose any of these. It just raises a strong suspicion that needs proper follow-up.

How concerning is this?

A ratio as high as 9.5 is well outside the normal range, which makes this more than a minor fluctuation. It’s something doctors take seriously and typically investigate further.
However, the outcome varies widely:
Some people are found to have MGUS, which may just be monitored
Others may need more detailed evaluation to rule out more serious conditions

What usually happens next

A doctor (often a hematologist) will likely order additional tests, such as:
Serum protein electrophoresis (SPEP)
Immunofixation
Full blood count
Kidney function tests
Calcium levels
Possibly imaging or bone marrow tests (depending on context)”

• This reply was modified 22 hours, 12 minutes ago by  rabbit.

[katiep59Participant]

Ok thank you I’ve had SPEP already and urine immunofixation which were abnormal. My FBC was normal and calcium was borderline. So I just have to wait and see now I suppose. I’m trying hard not to keep reading things but it’s difficult.

[rabbitParticipant]

It is the easiest thing in the world for me to say “don’t panic” but even in the worst case scenario of advanced, high risk myeloma (my diagnosis in 2022 – I am still in remission) there are an ever increasing number of highly effective treatments.
All that I can say is:
– Please keep us informed. People on this forum have a lot of information and experience.
– All the best!

[katiep59Participant]

Thank you 😊

[najmahParticipant]

Hi Katie and welcome to the forum. I’m new here myself after being diagnosed on 7th April.
I’m due to start my treatment next Tuesday. My light chains were similar to yours. I had a high Paraprotein level and low FBC so it’s encouraging that your FBC was normal.

Things moved very quickly for me and after the blood tests I had a full body MRI scan and a bone marrow biopsy which confirmed the diagnosis of Multiple Myeloma. It does come as a shock to the system, especially when up to these problems you have been fit and healthy.

I think Rabbit has given you excellent advice. It is all too easy to go on the internet and diagnose yourself, as soon as my blood test results came through I did just that! to I initially thought it was all doom and gloom but it certainly isn’t, I have already found lots of information on this site and I think joining the forum is such a good way to read of other people’s experiences and get their advice.

I’m wishing you well and I’m sure you will be back to tell us your outcome.

Best regards.

[katiep59Participant]

Thank you Najmah I hope I don’t have to have an MRI as I couldn’t go through with it last time I panicked. May I ask what your symptoms were if you don’t mind me asking you?

[najmahParticipant]

Hi Katie,
I found the MRI scan ok, a bit claustrophobic but I just thought of nice things! I believe you can receive light sedation for it.

Well my symptoms, I would say since late November I started having a bit of back and hip pain. Nothing that stopped me carrying on as normal, with Christmas coming up and the fact that my husband was undergoing Chemotherapy I just got on with things – as you do. Although I’m 73 I an a runner and keen gym goer. I found that by February I was getting pain when I ran and couldn’t lift my normal weights in Body Pump. I went to my GP in March who thankfully didn’t fob me off with painkillers for months but sent me for an X-ray. Two weeks later she rang to say the X-ray showed shadows and dark areas around my hip and down my thigh so the next day she had me in for blood tests, the day after that she rang to say she had the results and she suspected myeloma, she put me on a fast track referral to the hospital. I then had the blood tests repeated, the MRI and the bone marrow biopsy which confirmed that I had Multiple Myeloma.
I’m assuming you are 59 Katie? From listening to the ‘Myeloma Matters’ podcast it appears that 2/3 of Myeloma patients are older (I.e. over 70). So you would be in the minority age group.
When I was working a good friend I worked with was diagnosed with myeloma. We were both 56 the time. She had treatment and has been in remission for 16 years, she is really well and we tend to forget that she still actually has myeloma!

[katiep59Participant]

Aah ok – no I’m 67 in a couple of weeks and I have a lot of daily pain from fibromyalgia and cervical disc compression. It was the sweating that caused me to consult my doctor initially because I’m well out of menopause now and had a hysterectomy for ovarian cancer in 2016. I have had a bit of low back pain that goes into my legs and some peripheral neuropathy and also unexplained itching but apart from that I haven’t noticed anything else.

[najmahParticipant]

Well you don’t look 67! I had a hysterectomy too, for uterine cancer, that was 25 years ago.

[katiep59Participant]

Thank you. I wonder if they are connected gynae cancer and blood cancer? It’s all come at an awful time for us as my granddaughter is getting married in July 😢

[najmahParticipant]

I asked and was told they were not connected, although the consultant said you are ever so slightly more susceptible to get a different cancer once you’ve had one (I think she said something like 2% more likely).
I don’t know very much about Fibromyalgia, are the symptoms similar to Myeloma symptoms? Would you have had regular blood checks while you have had Fibromyalgia?
An exciting time for you coming up then with your granddaughter’s wedding. 🤞🏼You will be fine for it.
When I posted here on 7th April I had some lovely replies. There’s a lady called Jo who is a few months ahead of me with her treatment and she’s having the same regime as me. She gave me a great insight into her side effects although I know everyone is different and reacts differently to each aspect of the treatment.

[katiep59Participant]

Thanks so much for your help and I’ll let you know on Wednesday what they say.

[najmahParticipant]

Good luck for Wednesday 🤞🏼

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