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Thread: Mom with T-LGL and strange rise in platelets... Any ideas why? Worried....

  1. #1
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    Mom with T-LGL and strange rise in platelets... Any ideas why? Worried....

    Hello everyone,

    I am new in this forum community, and I have a question on a very rare occasion concerning T-LGL leukemia. My mom was diagnosed with chronic T-LGL some years ago (thank God still in non-critical levels, even though barely), and her spleen is slightly enlarged but not removed. However, even though I heard T-LGL L. makes platelets (thrombocytes) to drop in numbers, my mother's final results showed an immense-abnormal increase! Even when she retook the blood tests after some time, still they were extremely elevated (now constantly under aspirin prescription).

    Her doctors are all very puzzled and say it is a first. Anyone knows maybe what may cause that? She checked all organs (except head) and all checked ok... Could this be related to some autoimmune disease caused by LGL? Anyone with a similar situation??

    Any possible ideas and answers will be very appreciated! Thank you and I wish you all health and happiness!

    worried_daughter

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    Super Moderator Top User po18guy's Avatar
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    Sorry to hear of this. Have they described it as thrombocytosis? From the Wiki:
    "Elevated platelet concentration is thrombocytosis and is either congenital, reactive (to cytokines), or due to unregulated production: one of the myeloproliferative neoplasms or certain other myeloid neoplasms."
    Has she received treatment for the T-LGL? Since a congenital source can be ruled out, it appears that this may be a result of one or more of the following causes:
    Thrombocytosis and thrombocythemia

    All cells release cytokines (proteins), which signal other cells - activating or communicating with them for a specific purpose. Normally, this allows the body to function as it should. However, some cancer cells (including T-LGL and AITL) release certain cytokines that can cause any number of immune malfunctions, even arthritis. T-LGL is noted for associated autoimmune conditions, and these seem to be caused by cytokine release on the part of the cancer cells. Increased platelet production seems likely to be caused by cytokine release.

    This is very complicated, but it could be a sign that her T-LGL is progressing, mutating, or that she has possibly developed a bone marrow disorder or potentially even a secondary cancer. If she is not being seen by a major cancer research center or university hospital, she should consider consulting with one. It is not a good sign when doctors are perplexed.
    Last edited by po18guy; 02-10-2017 at 10:41 PM.

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    po18guy thank you so much for your quick response! From your history under your message, I understand that you have gone through a lot! I wish for you the best, and I send my prayer!

    As for my mom, she has not been treated yet for her diagnosis... Her doctors say we should not aggregate anything as long as her neutrophils are (even a little) above 500; but we are considering of taking it to a major cancer research center or university hospital as you suggested! From some research I made, I am considering the UVA Cancer Center, but we are from abroad, so we currently translate her history-results.

    The platelets, were described to us as abnormally elevated, and no pathological cause could be found yet to relate it to this phenomenon... :/ So I am not sure whether I can put it into further terms: essential or other specific type. "Elevated platelet concentration" though fits the picture for sure! Maybe as you suggest this could be a bone marrow disorder. It might be the only one making more sense... I just hope it is something manageable and a bigger center may help us confront with it and tackle it!

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    Super Moderator Top User po18guy's Avatar
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    Since her T-Cell levels are just within the acceptable limit (that limit may fit other people, buy may be too high for your mom), it may be that there are so many leukemic cells that their cytokines are triggering excess platelet production. All of this might be a sign that it is time for her to enter into treatment. I am guessing that treatments are relatively mild, as it is a slow-growing cancer.

 

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