I was treated for CLL with Venetoclax for a year ending last April. It was very effective.
Half-way through the treatment I developed a skin rash on arms and legs. The rash started with painful itchy spots. They did not seem to follow the lymphatic pathways.
Has anybody else experienced a similar skin rash associated with CLL?
Skin rashes are common with cll and with any number of Cll treatments. The basic treatment for many rashes is some prescribed or over the counter steroid cream. If it’s a persistent and troublesome rash, you might should see a dermatologist. There can be different treatments for different rashes, such as antivirals for shingles rashes.
Even for a dermatologist and with a skin biopsy, identifying the cause of some rashes can be difficult.
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...
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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This week I switched from acalabrutinib to pirtobrutinib / Japirca on hopes by Dr. Furman that my rash and MRD results will decrease, but if not I may need to restart photo therapy
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My CLL expert doctor thinks my refractory HHV6a virus is the cause, my dermatologist blames my CLL, and the expert dermopathologist thinks it is T cell dyscrasia, I doubt we will ever have an answer unless I can cure the CLL or the HHV6a.
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Len
Just for those following your excellent post, HHV6a, I just discovered ala google, is Herpes virus 6 which most children have by age 2, it says, and is apparently the rash often called roseola.
You describe exactly what I experienced while on Obinutuzumab and Venetoclax. My dermatologist is an expert on haematological conditions and skin. She told me she is normally unable to be certain what causes the rash but that it is common in blood cancers. She treated me with a steroid cream which did reduce the rash. I still have lesions since finishing the O+V and creaming with a quality skin cream deals with them.
Was a biopsy taken to determine the origin of the skin lesions?
Yes. They took a biopsy and tracked it with high focus photos but found no CLL cells in the rash. Hence, my dermatologist said it is characteristic of blood cancers and particularly CLL but that it is hard to pin down the specific cause. The steroid cream brought a big improvement.
Im on Acalabrutinib and had rashes 6 months into taking it. It took a month for the rashes to clear up. Hope you get some answers!
The first 4 weeks I was on Pirtobrutinib my skin was super sensitive (I was treatment naive). After the first 4 weeks, it calmed down.
I had something similar while on combination immunotherapy. A top-notch dermatologist and/or one specializing in cancer patients did the trick for me. Combination of strong topical steroids and prescription antihistamines did not cure the issue but do manage it well.
More here:
I'm on acalabrutinib and venetoclax and got terrible itching in my armpits travelled down both arms to my wrists. I tried lots of over the counter treatments. The only thing that worked was capsaicin. Initially when applied to those areas it burned like crazy but after a few hours it calmed down and the itch significatly lessened and went away a few days later. I suggest you treat one area at a time as toleratoed.
I am still waiting for the results of a plug biopsy. However, by chance, I found that Sildenafil seemed to ease the itching. When I researched this I found that phosphodiesterase (PDE) inhibitors are known to ease inflammatory conditions such as psoriasis and atopic dermatitis. Specifically there are different types of PDE, these are called PDE1, PDE2 through to PDE5. It is PDE4 that targets these inflammatory skin conditions. Sildenafil is primarily a PDE5 inhibitor but it does also have an effect in PDE1 to 4.
Has anyone else had any experience in this?
I spoke to a haematologist today. He was able to access the results of my plug biopsy. He said that T-cell clonality was detected. (CLL is, of course, B-cell cancer). So this is low grade T-cell cutaneous lymphoma. He is going to discuss with the multidisciplinary team and get back to me.
I have now had a diagnosis of prurigo nodularis. I have been prescribed Dupilumab. I had the first injection a week ago but have yet to see any improvement. There is a report pubmed.ncbi.nlm.nih.gov/332... suggesting that it can take two months for an improvement. Has anybody else had experience with this? Thanks
My Itchy skin
CLL and Skin Cancer
Skin Cancer and CLL a Mayo community study...
CLL and skin cancer 
CLL and skin issues/genetic markers
