Light Therapy

[DriedSeaweed]

Has anyone stopped light therapy for dermatology because of CLL? Or continued? Or started after diagnosis?

Dermatologists at NIH suggest I do not take any medications that suppress immune system to control psoriasis due to CLL and AIN. They did suggest light therapy. I was going to consider it but it dawned on me not to after seeing lots of discussion of skin cancer with CLL.

I have topicals that do not really work. I use them mostly in winter when skin hurts. Otherwise I dislike feeling greasy or having to lather up all the time.

Anyone have similar co-inconvenience?

Never did Humera or anything. I was about to give Otezla a shot but found out couple weeks later I had CLL.

[GMa27]

Check with ur oncologist. I was going to do light therapy to help with pre skin cancer on W&W but decided I didn't want to go thru the reddness on the skin. But during CLL treatment, I would not recommend.

[DriedSeaweed in reply to GMa27]

Actually just discovered this case report:

ncbi.nlm.nih.gov/pmc/articl...

Anyone ever treated with infliximab?

[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.

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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.

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).

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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.

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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...

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

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

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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.

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Len

[DriedSeaweed in reply to lankisterguy]

Thanks I will sift through it all!

I got some meaner psoriasis patches that hurt a lot before CLL diagnosis. CLL doctors at NIH sent me to their dermatology department to see if it was T Cell Lymphoma. They decided not to do biopsy since it looks like classic psoriasis.

It has spread and looks different compared to years past. T cells must be being told by CLL to be meaner.

Hope ibrutinib does not make it worse... I assume it is my first line. I heard chemo can make psoriasis go away but I was told not to be treated with chemo.