Mycosis Fungoides

[Madison1995]

Hi. I haven’t posted in a while but wanted anyone’s opinion on being tested for mycosis Fungoides and if anyone had CLL plus this disease. It’s a cutaneous T cell lymphoma. I’ve had a rash that was there two years ago and and it goes away and comes back in different areas. No scaling, itchiness or pain. Any advice would be helpful. I had a dermatologist look at it back in Feb at my last onc appointment and he said it looked like a lupus rash however I had a nurse look at it last weekend and she mentioned the mycosis Fungoides. I see my onc and dermatologist July 27th but just was curious if anyone has heard of getting both of these. Thank you

[lankisterguy Volunteer]

I have had a rash on my legs, arms and torso (mostly small light red dots connected in a web pattern –most days no itch or discomfort) since 2006 before my CLL diagnosis in 2008.

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Over the years I've had many biopsies; dermatologists and pathologists postulated Psoriasis, Eczema, drug reactions, and more recently CTCL or Mycosis Fungoides.

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A 2016 diagnosis by a research pathologist ( vivo.med.cornell.edu/displa... eliminated CTCL and its cousins, but attributed it to T-cell Dyscrasia.

Dr. Magro published extensively in the dermatology and pathology literature. ... cutaneous lymphoid dyscrasias to mycosis fungoides and Sezary's syndrome.

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ncbi.nlm.nih.gov/pubmed/176...

onlinelibrary.wiley.com/doi...

dermpedia.org/conference/dr...

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Len

[Madison1995]

Thank you. The information I have read states it can be sometimes

Hard to diagnose. Mine is usually just one round patch on either my neck or shoulder It doesn’t present itself as psoriasis or eczema. Just a little worried as I know it can be another cancer and to have both doesn’t look like a good prognosis

[WinJ3]

I was diagnosed with skin conditions that my specialist said was likely cause by cll. My dermatologist did biopics that determined some of my rashes were eosinophilic cellulitis and urticarial vasculitis. Mine was extremely itchy.

[Madison1995]

Yeah. I have no symptoms other than the rash itself. Just makes me worry that is could be a secondary cancer

[Hidden]

My Grandfather had it. His never came and went, it just stayed. This was 35 years ago, I'm sure things have changed. He was also misdiagnosed with skin cancer. When he had it it was considered rare. Hoops all turns out well for you.

Take care,

Paula