skin issue

[BlueJk]

I have had CLL for about four years. I am currently on active surveillance and treatment naive. I had a spinal fusion on July 17 for L4-5 due to Spondylolisthesis. I feel like I’m recovering as well as I can expect from the surgery. My hemoglobin dropped to 10 post surgery so I have been very tired but I am moving around fairly well with restrictions. While in the hospital I developed Grover’s disease. My dermatologist did biopsies to confirm. She treated me with a two week course of zithromycin and topical steroid cream. I am doing better but still developing a few new lesions each day. I have read that this disease may be associated with hematologic cancers. I’m wondering if other CLL patients have encountered this disease and if so what I might expect going forward. I’ve been pretty miserable with these outbreaks.

[lankisterguy Volunteer]

Hi BlueJk,

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I have experienced Petechiae and occasionally mildly itchy skin and plaque psoriasis since 2006, but Ibrutinib really made the rash strongly itchy.

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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. My CLL expert doctor thinks that my refractory HHV6a infection is the cause.

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The common result from a top expert skin pathologist that ran flow cytometry on the biopsy, was finding many T-cells and CLL cells in a specific layer of my skin. But the puzzle is why they are there.

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Our archives have over 441 postings that mention rash:

healthunlocked.com/cllsuppo...

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And over 1,077 postings that mention skin issues and CLL:

healthunlocked.com/cllsuppo...

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The NIH has several papers suggesting that CLL itself leads to skin issues, as noted here:

ncbi.nlm.nih.gov/pubmed/174...

SNIP: "Cutaneous lesions occur in up to 25% of patients with chronic lymphocytic leukemia (CLL). These can be caused by either cutaneous seeding by leukemic cells (leukemia cutis, LC) and other malignant diseases or nonmalignant disorders. Skin infiltration with B-lymphocyte CLL manifests as solitary, grouped, or generalized papules, plaques, nodules, or large tumors.....The most common secondary cutaneous changes seen in CLL are those of infectious or hemorrhagic origin. Other secondary lesions present as vasculitis, purpura, generalized pruritus, exfoliative erythroderma, and paraneoplastic pemphigus. An exaggerated reaction to an insect bite and insect bite-like reactions have been also observed".

Here is a 2023 article on how the immune system reacts to skin injury or causes autoimmune reactions:

the-scientist.com/news-opin...

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My most successful treatment was Photo therapy (lightbox treatment with UVB rays 3X per week- similar to a stand up tanning bed, but with medical precision on light frequency and duration).

daavlin.com/patient/uv-phot...

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I obtained a home unit in December 2020, it's 2 meter/ 6 ft high with 8 special fluorescent bulbs see:

daavlin.com/product/patient...

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The psoriasis & seborrheic keratosis is in full remission and I only need 1 treatment per week - a total of 8.5 minutes exposure to keep it under complete control.

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Len