Itching rash with cll

[Bluegillking]

I am 60 and have known about my CLL for 2 years. Several times over the past year I will break out with an itching rash that looks like hives. They may remain for 2 weeks or more. I am currently on no treatment and am just wondering if anyone else has had these symptoms?

[Cllcanada Top Poster CURE Hero]

Have you seen an dermatologist during these rash events😃 or discussed it with your CLL specislist?

Cll can infiltrate the skin, its called 'leukemia cutis', and while quite rare, the chances are greater in lymphomas.

Hope you pursuit this further with your docs...all CLL patients need annual skin scans with a dermatologist, might be a good time to discuss this...

~chris 🇨🇦

[Bluegillking in reply to Cllcanada]

Thanks for the advice. I am going to an oncologist and he is just kind of brushing this off as hives. One thing I have learned in the past few days is I need to find a CLL specialist. Thank you so much for the information. ☺

[Cllcanada Top Poster CURE Hero in reply to Bluegillking]

Might be hives.. or something stress triggered... I don't know...

A hemaetologist usually is fine... perhaps see a top drawer specialist prior to treatment or if your genetics suggest a more aggressive CLL, like 17p deleted, TP53 mutated or complex kartotype...

Best option in these cases is likely a clinical trial, in a major research hospital...

~chris 🇨🇦

[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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Each of the 4 times I was treated for my CLL (prior to Venetoclax) it got visibly worse, but Ibrutinib made it much worse- angry red & itchy.

When I paused Ibrutinib my skin was back to normal (my own normal light red dots) in 2 weeks, and restarting Ibrutinib after 4 weeks made it angry red quickly.

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

The common result from expert pathologists 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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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).

In winter - dry cold weather, if it becomes itchy and bothersome, I use Triamcinolone Acetonide (prescription steroid cream) for 2-3 days then switch to a good moisturizer like CeraVe until the rash is well controlled.

The most recent diagnosis by a research pathologist eliminated CTCL and its cousins, but attributed it to T-cell Dyscrasia.

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

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Our archives has 405 replies that mention skin issues and CLL:

healthunlocked.com/search/s...

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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".

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I suggest you have a good cancer oriented dermatologist do a full body inspection of your skin every 6 months (we get skin cancer at 5x to 8x more often than non-CLL people- and the only way to detect it early is get an expert examination) and helping your treat your sores will be part of that care.

Len

[Dinimom]

I have broken out with very itchy rashes twice in the last year. I am currently dealing with the worst case after surgery last week. Belief that the cause was related to anesthesia or medicine reaction, I did not consider it CLL related but since the symptoms are the same as similar breakouts only more severe this time, I wonder if the cause is CLL related.