[happybeeParticipant]

Hello,

I have not yet been diagnosed with Myeloma yet but wanted to see if anyone is or has been in a similar situation to me, as I can’t seem to find what it means specifically and seems slightly unusual. I had a blood test for a routine thyroid test, and it came back that I had paraprotein present, further tests were run which showed very high Lambda free light chains.

I have MS and have regular blood tests which have not shown these issues previously, generally pretty fit and healthy and aged 55. So between a blood test on the 30th August and then another one on the 4th November this problem has suddenly appeared.

I saw the haematologist and went through my history. I don’t have any CRAB symptoms or any Myeloma indicators. I have had a full body MRI which is completely clear. I am now just waiting for the results of my Bone marrow biopsy, which feels like the longest 2 weeks ever. So there are no other signs than a very high presence of lambda free light chains. I have read all I can and watched countless videos but can’t specifically find this kind of situation referenced. I am struggling to believe with that amount of Lambda free light chains, I wouldn’t be experiencing something. I cant even find anything which talks about such an abnormal ratio.

Does anyone have any thoughts on no symptoms but such a ridiculous light chain ratio which has happened very quickly. I am not clear if this counts as a defining event, but the haematologist indicated that they would likely treat with Chemo but she is still waiting or the Bone marrow aspiration and biopsy results.

Some of my results:

Serum total protein 87g/L
Serum globulin level 49 g/L

Significant IgG paraprotein with significant lambda light chain excess

Immunoglobulin a – 0.2 g/L – low
Immunoglobulin g level 35.3 – high
Immunoglobulin M level 0.4g/L – low

Serum free light chains
Kappa 6.3
Lambda 4917.0
Kappa/Lambda ratio <0.0001

Thanks for reading, this groups looks amazing!

[mulberryParticipant]

Welcome Happybee

I was in a fairly similar position to you almost 5 years ago.
I incidentally had a blood test which found that I had hypothyroidism, but some of the other results were odd. Further tests showed that I had paraproteins and high lambda light chains.

I did not have bone lesions and was unaware of any symptom of myeloma. Tests revealed some minimal kidney damage and a degree of anaemia.

As my myeloma progressed over a few months, whilst these tests were being carried out and whilst I got a second opinion, my thyroid caused increasing problems. Eventually I had half of my thyroid removed and was diagnosed with Hashimotos, autoimmune thyroid disease. Although I’ve not been able to find much in the literature, I believe that for me the inflammatory processes involved in myeloma triggered the worsening Hashimotos, or vice versa.
There is a higher than expected association between autoimmune diseases and myeloma, although no specific autoimmune disease particularly, eg MS, as far as I am aware.

My bone marrow biopsy revealed that I had over 60% myeloma cells in my bone marrow, which is a myeloma defining event and meant that I needed to start treatment. I was diagnosed with IgG lambda myeloma. I have immunoparesis where my non involved immunoglobulins (igA & igM) are low. (I see you have immunoparesis too- at the moment- sometimes this normalises after treatment.)

It is always terrifying to be being tested for myeloma and I hope you get your definitive results soon. As all patients have non-identical presentations of the disease, it often takes a consideration of all the test results, especially the bone marrow biopsy, to determine whether a patient needs to be treated immediately or whether the disease is Smoldering, in which case ‘watch and wait’ is safe.

As I said, I needed to start treatment and had 5 cycles of induction therapy then a stem cell transplant, which has been followed by 4 years so far of pretty normal life without apparent myeloma, “remission”. And once I had had a Complete Response to the myeloma treatment, and my thyroid surgery, I’ve had no further problems with my thyroid.

With best wishes.

[mulberryParticipant]

Ps I’ve always been convinced that my myeloma had very suddenly flared up as I’d been on a very active holiday only 6 weeks before my initial diagnostic tests.

My lambda light chains were not as high as yours, but I’ve had contact with patients with light chains in 10s of 1000s.

I hope you get your results soon.
Jane

[happybeeParticipant]

Thank you Mulberry for your reply. It’s so reassuring to hear positive stories, when waiting for these results.

I know that I need to be patient and wait for the BM results, as everyone is different. I hope its before Christmas, as I am in limbo and need to decide who to tell and when. I’d love the diagnosis to be MGUS or Smoldering but with the amount of Lambda free light chains I can’t think I will be that lucky.

I too was tested for Hashimotos but it was clear. As you said, once you have one autoimmune disease you are more susceptible to get others. I think there may well be a link between these types of diseases. My MS is pretty stable and known I have had it since 2009. I more wonder if it is the MS medication which could have had an impact. The last drug caused BCC skin cancer, so currently not on any medication as was about to start ofatumumab, which is now on hold.

In terms of your second opinion, would you recommend? I think my consultant who I have not actually seen (just the registrar) is the same one who I would see private potentially so probably no point. However I wonder if the treatment plan would be different for private patients?

Thank you for taking the time to reply 🙂

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