Hi I have either high count mbl or very early cll, i will know more when i see my specialist in November. I just wondered if anyone had developed a paraneoplastic syndrome as a result of their cll.
About seven years ago i developed a lot of neurological symptoms which resulted in peripheral neuropathy, predominantly small fibre, and other strange processes like a type of raynaulds syndrome.
These occurred before my lymphocyte levels began to increase very slowly. At the time i was in optimal health, 20kg lighter, running and exercising +++ and eating a predominately plant based diet
The rheumatologist at the time said unless my neuropathy was idiopathic i could develop a cancer in the future, and i did cll.
When you google malignancies associated with paraneoplastic syndrome, haematological malignancies are listed.
No one has been able to enlighten me and i guess its rare, so i may never know
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paulgf54
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Strangely I don't recall hearing of this association before, so it must be fairly rare. Normally I wouldn't reference a case study, but this study on one paraneoplastic disorder - Paraneoplastic Pemphigus, is more recent (May 2020) and does include some useful background references with respect to the condition.
Paraneoplastic Pemphigus: An Indication for Treatment in Chronic Lymphocytic Leukemia
1) "Currently, there are established indications for the treatment of CLL; however, presence of paraneoplasms as an indication for treatment is unclear. Patients with paraneoplasms who underwent expeditious treatment have exhibited better clinical outcomes." (My emphasis)
2) "The clinical onset of PNP in relation to the underlying hematological malignancy may occur over three timelines. In about two-thirds of cases PNP precedes the detection of the malignancy, with some cases diagnosed during active disease or during remission [11]. A myriad of cases postulate underlying pathogenesis of PNP since its initial discovery. The most widely accepted theory postulates that the malignant process induces both humoral and cell-mediated immunity. The driver mechanism involves the activation of autoantibody production in response to maladaptive immune function and cross reactivity between antibodies directed against tumor cells and epithelial antigens [12]."
Given the rarity of this condition, I'd be very wary about survival statistics mentioned in papers, when treatments were limited to 'chemo' options. Note also "Recent evidence has shown clinical response to the combination of Bruton Tyrosine kinase inhibitor Ibrutinib and anti-CD 20+ monoclonal antibody rituximab in patients with CD5+ B-cell chronic lymphocytic leukemia and PNP [20]."
You are a bit limited with respect to CLL expertise in Perth. Do you consider your current specialist is sufficiently across the relevance of your joint diagnosis? Has he sought expertise elsewhere to ensure that you are provided with what is currently considered optimal treatment?
Thanks Neil, i see Dr Chan Cheah at Hollywood hospital Perth, his area of expertise is lymphoma and Cll. I havent asked him about this but will do so on my next visit.I have in the past as a nurse seen cases of Pemphigus in association with an underlying cancer but never met anyone in my situation. It may just be coincidental, but i do wonder.
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CLL + nephrotic syndrome: furosemide problem
Gilbert's syndrome
Myelin Associated Glycoprotein (MAG) Antibody
Superior vena cava syndrome. 
Peripheral neuropathy
