Any thoughts on these: Hi All Just about to... - CLL Support

CLL Support

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Any thoughts on these

TheFlyer profile image
3 Replies

Hi All

Just about to finish Cycle 9 of O & V,

any thoughts on these

Jules

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TheFlyer profile image
TheFlyer
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3 Replies
lankisterguy profile image
lankisterguyVolunteer

Hi TheFlyer,

I have experienced Petechiae and occasionally mildly itchy skin and plaque psoriasis since 2006, whenever I am in treatment it is very visible, 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.

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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...

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. , for the last 2 years on Venetoclax. When I switched to acalabrutinib / Calquence mono in mid 2022 the rash disappeared for over 1 year but then gradually returned.

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Len

TheFlyer profile image
TheFlyer in reply tolankisterguy

Many thanks Len for the detailed response. Thank you.

jerryjerry profile image
jerryjerry

You should see a dermatologist. Skin cancers are common with CLL patients. My doctors recommend check-ups multiple time a year, even If I do not notice anything. Most skin cancers can be stopped with early treatment, even melanoma.

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