CLL with secondary Lymphma: I am a CLL... - Leukaemia Support

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CLL with secondary Lymphma

benpanesar1956 profile image
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I am a CLL sufferer with remission after chemotherapy . Now with diagnosed with a secondary Lymphoma Lymphoplasacytoid and on watch and wait . With a compromised immune system i ended up with Chronic Shingles . The pain is excruciating even after 6 weeks . Has anyone got same as me?

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benpanesar1956
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HAIRBEAR_UK profile image
HAIRBEAR_UK

Hello benpanesar, welcome

Sorry to read that you are experiencing ongoing excruciating pain and neuralgia following a shingles reactivation. This is indeed a problem for CLL patients especially during and post treatment , the pain can be mind numbing, many of us can relate to that, it can take quite some time to recede. Are you receiving medications now to hold it back?

You are in the wars at the moment, your diagnosis of a secondary lymphoma and now having to experience a new type of watch & wait can't be easy, were you on W&W before your CLL treatemnt? ,

Lymphoplasmacytic lymphoma is a rare condition. you may not get a reply. If you have not already found them WMUK is the national charity supporting people with Waldenström’s macroglobulinaemia and those with lymphoplasmacytic lymphoma which is a subgroup, they have an active on-line community on their website wmuk.org.uk you can also email them through their site or at info@wmuk.org.uk or ring their help line on 0208 2816477

benpanesar1956 profile image
benpanesar1956 in reply toHAIRBEAR_UK

Many thanks for a swift response and my since apologies for the typo errors. Thanks for the info on reaching others through the website.

The secondary condition is Lymphoplasmcytoid Lymphoma .

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