Hello all. I'm posting about what I think is a CLL/SLL related skin condition.
Two years prior to my SLL diagnosis, I started getting what felt like hives or insect bites, but I have no known allergies and they were not bites.
I would get an insane itch somewhere on my skin, and then a pale welt would appear that eventually turned pink and then red. They were all different sizes and appeared mostly on my legs and feet, but also sometimes on my arms.
Eventually they subsided, and I began treatment with acalabrutinib 16 months ago. However, three months ago those welts started appearing once more, and it's still happening even though I'm temporarily off meds in preparation for surgery.
I saw my doctor when they appeared again and he was mystified. He suggested they were bites or an allergic reaction to meds. I know they are neither.
Does anyone here know about CLL/SLL skin conditions and/or experienced the kind of thing I describe? I'd really like to get to the bottom of it! Thanks.
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Amberesque
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Amberesque, you say that you have no known allergies, but have you been tested for allergies by an allergist? An allergist could do a skin prick test that might reveal the cause of your rash and welts.
I suffered from rashes and welts for weeks which it turns out were caused by food allergies. Elimination of the offending foods cleared up my rash and welts within about a week.
Like you, my skin problems appeared over one year before my CLL diagnosis and it varies in intensity with treatment causing more symptoms and progression causing less.
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I've had many biopsies and several dermatologists and pathologists suggested many causes, but when the biopsies included FLOW testing, there were very high levels of CLL cells and T cells found in my dermis, but no one knows why they accumulate there.
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Photo therapy treatment (Lightbox treatment with Narrow Band UVB rays) that is used for Psoriasis has been the most effective for me, but topical steroid creams provide some relief.
Hi Amberesque. I experienced the very same welts as you have described. They would appear in the morning with regularity. I'm certain they were related to CLL, which for me has caused a number of skin issues (now all under excellent control). The problem with welts was +/- 10 years ago, and I think I took over-the-counter antihistamines for relief. And, after some time, they just completely stopped. Altogether, they had lasted about 6 months. Hope they resolve quickly for you as well.
Hi Amberesque. For several months prior to my SLL diagnosis in March 2021, my skin broke out in inexplicable rashes (that were thankfully pain & itch-free). The spots would start out red and about the size of a quarter, then grow irregularly to several inches long. They were all over my arms, legs and torso, and during a breakout my wife would call me the "pink leopard."
My GP wasn't sure what to make of it, she prescribed me steroid cream (no effect) and antifungal cream (no effect). Got referred to a dermatologist, who prescribed heavy antihistamines... no effect.
In the meantime, I was scheduled to start FCR for my SLL on April 3 (no W&W for me - I was already Stage IV), and I started FCR with my spots. By April 6, after 1 Ritux infusion and 3 days of fludarabine and cyclophosphamide, my spots were completely gone (as in, without a trace) and I haven't seen them since.
I hope your condition resolves quickly and painlessly.
I used to have similar ones years ago. Regular Sun epxosure fixed the problem. They did not like sunlight. I continue doing a 1 hour full body Sun exposure in season WHEN THE LENGTH OF MY SHADOW EQUALS MY BODY HEIGHT. Not once did I get sunburn and I'm the guy who looks like the walking plain yoghurt in wintertime (with blue eyes to boot)
Hi! Thanks for the reply. I was diagnosed in January 2021, also stage IV. I am IGHV unmutated so I was on ibrutinib for a year and then switched to acalabrutinib four months ago. However, I've been off the medication for a week now due to a surgery and my lymph nodes are already starting to swell up again. Scary!
I get red swollen welts that are itchy whenever I have something cold against my skin. I also get what looks like a thick red rash on my lower legs and face if I’m in the cold wind. It clears after a few hours as My skin warms. I also get severe pain in my stomach and chest if I eat of drink anything cold that lasts for a few hours
A close relative had occasional but lifelong hives/welts. Allergist tested her and everything was negative until the ice cube part, which got a big reaction. The diagnosis was cold urticaria. My family had never heard of such a thing, but in rethinking the circumstances around the hive history, the diagnosis made perfect sense. For the last several years this relative has taken an allergy pill daily and she carries an epi-pen at all times. All good now.
OMG, I absolutely do!!! I have asked my oncologist numerous times and she said it's not related to CLL but I really think it is. She sent me to the dermatologist who gave me steroid cream which didn't help. Dermatologist thought it was an allergic reaction. She sent me to get allergy tested. Test results came back for zero allergies. I now call them my cancer bumps. They seem to come and go for me with no underlying reason. No new meds, lotion or laundry detergent. I woke up last week with a diamond shaped spot on my forehead. I was like WTH did I get skin cancer overnight! Too days later it's gone. Hope you find out what it is.
I came up with Eczema in patches around my body after nine months treatment with O+V my son is a Consultant Dermatologist confirmed it was eczema. Never had it before. When I spoke to the Haematologist about it said didn't think it was a result of my treatment. Topical steroid cream cleared it up but only after I had finished my 12 month treatment.
I take a loratadine antihistamine every day. Stops my skin itching but also gives me better quality of life! My dr is happy for me to continue taking them during treatment.
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