Good morning @GemmaBloodCancerUK
I have a question about my MGUS diagnosis IGg Kappa.I had a serum free light chain blood test which was normal which was reassuring , since then my paraprotein has increased significantly so i’m wondering would I need another serum free light test or is that decided,or can you still get a rise in the light chain .Ive looked at the pictures showing Kappa Lambada still making sense of it.I have the serum immunoglobulin test every 12 weeks with the usual other bloods .If you could explain that would be good.
Kind regards
Bannanacake
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Hello,
I am totally new to this forum. Struggling to get any real explanations re my MGUS blood test results. From what I can see I have a paraprotein IgM consisting of both Kappa and Lambda . Any information you could provide as to what this means would be appreciated. I understand that these are Light chains( nothing showing up in urine BJP test). Is this normal, to have a paraprotein consisting of both light chains, rather than the heavy chain itself(if that is what it means) and what specific disorders would this paraprotein be an indicator for?
Many thanks
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Hi@homer,welcome to the forum,I too have MGUS and yes it is a struggle trying to make sense of it I can relate to your questions ,I have IGg Kappa and I am on watch and wait blood tests every 12 weeks. @GemmaBloodCancerUK is answering questions and I submitted a query last week similar to yours about light chains and heavy chains so I’ll look forward to hearing .Have you looked on BCUK website for info on MGUS ,also Myeloma UK have lots of detailed info and both sites have a helpline number which I’ve found really useful.The more info you can get for yourself the better but its best to keep to these sites in UK.There are a few of us with MGUS on the forum ,I think we are all at different stages of diagnosis and it helps to have support. I’m sure others will see your post and that @GemmaBloodCancerUK or @Alice_BloodCancerUK will give you useful information.
Keep posting ,all the best
Bannanacake
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Hi @homer I am so glad that you have found us, yes we all have different blood cancers on here and at different stages. We are also very special, unique human beings with our own medical histories, family histories, symptoms, allergies, medications, ages, orientations etc. It can be a complex area, but if anyone can @GemmaBloodCancerUK can.
I really look forward to hearing more about you and you are now part of our forum family.
Look after yourself
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Hi and welcome to the forum. It’s a great place to share experiences and to ask for advice and information. I’m look forward to learning more about you 
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Dear @homer and welcome to the Forum. Thank you for your question, can I ask whether you have seen a Haematologist regarding your MGUS or is your GP monitoring you? I will include two resources which you may find useful in understanding MGUS. Here is the MGUS information booklet which is produced by our colleagues at Myeloma UK https://www.myeloma.org.uk/wp-content/uploads/2018/03/Myeloma-UK-MGUS-Infosheet.pdf and also a MGUS diary which is very useful for tracking you bloods and reviewing symptoms: https://www.myeloma.org.uk/wp-content/uploads/2022/01/Myeloma-UK-MGUS-Diary.pdf.
MGUS can be categorised on the basis of the type of abnormal antibody produced. The categories of MGUS are:
• IgM-MGUS
• Non-IgM MGUS – i.e. IgG, IgA, IgD or IgE MGUS
• Light chain MGUS – where only the light chain part of the antibody is produced and the heavy chains are not.
In terms of what the paraprotiens may be an indicator for, can I ask whether your Doctor has explained the monitoring plan and parameters they will be following? I will look into your questions further but thought I would send you this in the meantime.
Kind regards
Gemma
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Hello @Bannanacake, apologies for the delay in replying.
Can you tell me what your paraprotein level is?
We do know that paraprotein levels in MGUS patients can certainly go up and down and the GP would have clear parameters to monitor and react only when reaching these parameters in more than one of the criteria mentioned in the diary: https://www.myeloma.org.uk/wp-content/uploads/2022/01/Myeloma-UK-MGUS-Diary.pdf. I will look into some resources to explain the complexities of MGUS blood test and get back to you.
Kind regards
Gemma
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Dear @heatherthomas, how are you? I have spoken to my colleagues within the COVID vaccines taskforce and they have not seen any evidence of an increase in platelets for those patients with ET following COVID infections. There is a paper that shows a higher risk of thrombosis for ET patients who have a Covid infection, so it could be that the Covid vaccine induces some of the same but milder symptoms as a Covid infection. So from this, ET patients should continue to be carefully managed to prevent thrombosis and that vaccinations are still recommended. Also, please do report any symptoms. I will as ever keep you updated with any further developments we hear of. Kind regards Gemma
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Hello@GemmaBloodCancerUK ,thank you,yes the rise in my paraprotein is unpredictable as you say it can go up/down,last reading was 11.10 from 10.90 over 12 weeks,previous time it was 2.20 over 12 weeks and same before .
I have the info you gave me and the diary which is good .Thank you for looking into it though and my GP has guidance from the Haematologist.I like what you say about the "complexities"of blood tests for MGUS.
Kind regards
Bannanacake
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Hello Gemma and thank you for links and info. My GP is monitoring but seems as confused as me about the results , so he sent a submission for advice from the Haematology department but, so far, no reply received after about 2 months…
I am having 3 monthly blood and urine tests for 2 years to monitor levels. Beyond that, very little info has been given to me hence why I have contacted the GP about the situation.
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hi I’m on a watch and wait for hypoplastic Myelodysplastic syndrome (MDS) with a small pnh clone.
i have been anaemic and neutropenic for a few years now, also slightly low platelets from time too time.
i find it frustrating some times as because my haemoglobin is only slightly down between 12-13 so my consultant says its near normal, but my rbc hasn’t been above 3.7 for years (mine ranges between 3.2-3.7) as a keen cyclist it feels anything but slight on the flat its not to bad but on hills my heart rate goes through the roof.
i have now resorted to an e-bike but now no longer go on group rides as i got fed up with the looks and really don’t feel like explaining why the ebike.
so why do they always concentrate on haemoglobin when i have roughly 25% less red cells
and you can have all the haemoglobin in the world but with out the red cells too carry it its pointless.
many thanks chris
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Dear @chris-j ,
Thanks for posting and I do appreciate your frustration. Can I ask whether you and your Consultant have discussed the red cell count at length, demonstrating the changes you have had to make to your exercise? Has there been any mention of your iron levels or stores?
In terms of correcting the Red Blood Cell levels, there are some options, diet is one:
- red meat
- beans, such as red kidney beans, edamame beans and chickpeas
- nuts
- dried fruit – such as dried apricots
- fortified breakfast cereals
- soy bean flour
Medical replacement is more complex and requires discussion with the team. Erthropoetin levels can be tested to assess need for replacement
Erythropoietin (EPO) Injection For Anaemia - Side Effects - Macmillan Cancer Support. Blood transfusions are only recommended when the haemoglobin drops below a particular parameter (usually <80 g/litre) alongside significant symptoms. Long term blood transfusions can lead to iron overload so this option would be carefully considered.
In answer to your question, I would suggest that the team would consider the red cell count too but I think it worth further discussions. Do you have a Clinical Nurse Specialist you can talk to about this?
Do give us a call if you would like to talk this through further: How to contact Blood Cancer UK | Blood Cancer UK
Kind regards
Gemma
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