Newbie Not Diagnosed but Seeking Knowledge

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This topic contains 5 replies, has 3 voices, and was last updated by  rabbit 3 months, 2 weeks ago.

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  • #149536

    kmc1
    Participant

    Hello Everyone

    Sorry to meet you under these circumstances but I would welcome your knowledge on MM testing etc

    My bloods have gone a bit haywire for a while but the lab recommended a Myeloma Test. My GP kindly did the test however he’s not concerned at this point. I appear to have some classic symptoms of MM. Develop gout on daily high dosage meds, fatigue, some rib area pain, leg and foot pain, swollen feet and ankles. thirst/constant dehydration, arms tired when arma are raised carrying out a task. High blood pressure even though I’m on daily meds, lower back pain but I have a history of lumber surgery and spine injections, however I still have pain. Finally over the last few months constant, infections, Diverticulitis and UTI, raise temps.

    Kappa result – 25.3mg/l – Abnormal
    Lambda result – 17.3mg/l – Normal
    K/L light chain ratio 1.46mg/l – Normal

    Kidneys checked and came back normal. Liver function Tests high, Gamma GT 217 abnormal normal range is 38. I should say my body is usually a good gauge for medical issues, I don’t always measure correctly on tests.

    Can I clarify what other tests results I should be looking at. I would welcome any personal experience, lessons learned, knowledge and guidance.

    Thank you in advance.

    • This topic was modified 3 months, 3 weeks ago by  kmc1.
    #149547

    rabbit
    Participant

    Hi kmc1,

    There are 4 classic symptoms of myeloma.

    – hyperCalcaemia, which high levels of calcium in the blood. If you believe that you have myeloma, this would be an obvious bkood test.

    – Renal (=kidney) failure. Although constant thirst can be an indicator, your kidneys have been found to be normal, so that seems unlikely.

    – Anaemia. Again,if you believe that you have myeloma, this would be an obvious bkood test.

    – Bone pain. You have that, but there is an alternative explanation.

    I am a layperson (with myeloma), but my best guess as someone with myeloma myself, is that if you don’t have hypercalcaemia nor anaemia, then myeloma seems unlikely.

    Regards
    Rabbit
    PS This is very speculative from me, but you mention that your liver function tests are high. In reading up on constant thirst as a symptom, liver conditions cropped up again as a potential cause (and swollen ankles got mentioned too in that context). Reminder: I am a layperson, so please don’t rely on me!

    #149564

    sammy65
    Participant

    Hi. Depends what test the GP booked. Light chains quantitative test is not a single myeloma diagnostic test. When you have increased or low light chains, doctor may order a special test to check what those light chains are doing. There is another part of the chains called heavy chains which will show if they were secreted by cancerous bone marrow. The GP may check your urine for Jones Bence protein and order electrophoresis test. That test will find out if monoclonal heavy chain/paraprotein is present. If positive for paraprotein you will be referred to haematology under cancer pathway for further investigation. There is a 2% chance that people have myeloma without secreting light or heavy chains affected by cancer, however the GP will monitor you to find out. I was initially not as suspect for myeloma, not anaemic, bones were fine, no pain, normal kidneys and calcium, but was fatigued; and paraprotein test showed suspect for myeloma.

    #149570

    kmc1
    Participant

    Thank you rabbit for taking the time to respond.
    What I didn’t say previously is that I’m currently a Neuroendocrine cancer patient and though the symptoms are representing possibly MM or something else, it does need some further investigation. The treatment I had for Nets was PRRT,(Peptide receptor radionuclide therapy ) which one of its long time side effects is cancer. Current cancer was
    Only diagnosed when it had reached stage 4. Im crossing the t’s and dotting the i’s.

    What blood test is used to measure – hyperCalcaemia?

    I will check my anaemia as I do take prescription folic acid and Vit b compound daily.

    Thank you as your info was very useful.

    #149571

    kmc1
    Participant

    Sammy65

    Thank you so much for replying. I will check what has been checked, as he did do urine tests as well. I’m defo a classic case of not revealing itself in tests.

    #149573

    rabbit
    Participant

    Hi kmc1,

    You asked about tests for hypercalcaemia. My blood gets tested for calcium levels. The normal range is 2.10 – 2.25mmol/L. At diagnosis, my calcium level was far higher, but are now consistently in the range.

    Remembering my A level chemistry from many years ago, mmol/L is millimoles per litre.

    There are actually 2 mwasures taken for calcium, as is and ‘corrected’ but my calcium kevels are always about the same on both measures and the normal ranges are the same.

    Hope that makes sense.

    Regards
    Rabbit

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