CLL and Dermatology by Patient Power Thursday, August 12th at 2 pm Pacific time / 5 pm Eastern USA

[lankisterguy]

patientpower.info/events/ev...

Thursday, August 12th at 2 pm Pacific/5 pm Eastern

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Did you know more than 25% of CLL patients will develop skin issues?

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CLL patient advocate and host Michele Nadeem-Baker will be live with a CLL specialist and a dermatologist that treats skin cancer from The Ohio State University Comprehensive Cancer Center for a discussion about CLL and skin.

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How do skin concerns factor into CLL treatment decisions and how can you lower your risk of skin cancer? What role can a dermatologist play on a patient’s care team? Join us to learn more!

Register here: patientpower.info/events/ev...

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Len

[Gman2]

Hey Len, thank you for sending this. I have cll bumps on the skin that have developed over the past year. The doctor refers to them as lesions but they are like mosquito bites come and go. Very frustrating as I have a few around my mouth, cheeks and now forehead. I am scheduled to start tx next Tues with O and V. Other than the cll bumps my bloodwork is pretty good except for my WBS which is 69 and of course neutrophils and lymphocytes. I like most am worried about the covid issue and feeling vulnerable when the tx wipes out any immunity I received from the vaccine. Thanks, Gerry

[lankisterguy Volunteer in reply to Gman2]

Hi Gman2,-

Lesions are the medspeak term for anything that is odd or not the same structure as normal. See: medicinenet.com/script/main...

medicinenet.com/script/main...

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So I would liken it to a doctor saying you have an upper respiratory infection- which means he/she has no idea of the cause, but they are saying they believe there is an issue, so they give it a fancy name that means "I don't know."

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To narrow down on whether your lesions / bumps are bacterial, viral or fungal would require a punch biopsy and a good dermopathologist. The generalists will just call it eczema or psoriasis, which also means they can't figure it out.

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In my case a really top tier dermopathologist at Weill Cornell NY Presbyterian ran Flow Cytometry along with the normal bacterial and viral cultures to conclude I had CLL cells and T-cells in my dermis layer, but the underlying cause was not determined. There is a separate cancer called Cutaneous T-Cell Lymphoma that is very tough to diagnose, and my CLL expert thinks that it is caused by my refractory viral infection of HHV6a an infant disease called Roseola or Sixth's disease.

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Some CLL patients see their skin improve when they get treatment, and others (like me) see their skin lesions get worse when they start treatment.

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We have seen that very few people treated with Obin/Gazyva prior to their COVID vaccination develop antibodies, but getting the COVID vaccinations first might have a better chance of success.

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Any chance of getting a blood draw to test you for the "spike" proteins before you start your Obin?

This screen shot has the terminology used by LabCorp for that test

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Len

COVID test results to LLS study

[Gman2 in reply to lankisterguy]

Hi Len, I did have it biopsy last year and it was determined to be call on the skin. The lab sent it to a few specialists to make sure as it was so unusual. That’s what they told me as it took a while to get the results. I did get 2 Pfizer shots and did produce some antibodies but that will probably diminish when I start the infusions this coming Tuesday. I sent the hematologist an email asking about the booster and if I should wait for TX. Have not heard back. Thanks

[lankisterguy Volunteer]

Hi Gman2,-

Finding CLL in your skin is actually expected, since both T-cells and B-cells will respond to any infection or trauma to limit the damage. It is only rare for dermatologists to test for white blood cells in the different layers of skin.

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What stumps the experts is whether the lesions are caused by an immune reaction (like a mosquito bite or poision ivy) or are there to combat an bacterial or viral infection at the site.

So it becomes like a chicken vs. egg discussion. What is the cause?

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Like many people with Psoriasis, I can control my skin lesions by using Photo Therapy - narrow band UVB rays that penetrate the skin and kill the white blood cells in the dermis layer. So I have a effective treatment, but still no diagnosis of the cause.

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Len

[Pin57]

Timely post Len! Today, I just happen to be seeing a top local dermatologist (fortunately for me) for the first time n lucky I got in 4 months early via a cancellation!

Read on this site it’s a good idea to tap into a dermatologist early on being a CLLer plus skin cancer happens to run in my family tree so it can’t hurt to get it checked out annually.

Besides clueing my dermatologist about my CLL condition and family skin cancer history, what else should I tell the doc on my first visit? You’ve listed a few unfortunate things you’ve gad to deal with skin-wise n I assume the patientpower web would educate me further what to be aware and/or look out for.

Geeze 25% is a significant % on us isn’t it?! Well … keep covered for sure from the sun best we can and see a dermatologist for “checkups”, right?

Thanks for your insights on this important topic Len. Hope your conditions get better.

[lankisterguy Volunteer in reply to Pin57]

Like everything else with CLL, our skin issues are heterogeneous (med speak for everyone gets a different problem).-

The following words from the NIH are some of the densest med speak I have ever read- (share these with your dermatologist- I expect the doctor may need to look some of these up):

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 treat your sores will be part of that care.

Len

[Pin57]

Thanks Len for your guidance and extensive knowledge of this topic.

Living at 6,000 and 9,000 feet elevations as we do, the skin cancer watch is a big deal among those I know here. Skin cancer is common to get among other skin issues.

I like the idea of a baseline body scan, always good to have baselines known before problems arise. Thanks again for your quick reply too!