Blotches

[Aarree]

Anyone on here have any red blotches come up on their skin ? Been on ibrutinib for 2 years, and haven't noticed anyone else at clinic with them, they start as a purple colour, then turn red, then start to fade away, then come back again mostly on my hands and lower arms ?

[cllady01 Former Volunteer]

Check with your Dr. it could be the Ibrutinib or it may be Allopurinol if you are taking it, also--do not wait to ask, call your CLL Dr. and describe what you are experiencing.

[dmmck]

I am on my eighth month of ibrutinib and I get them frequently. My doctor said it is the ibrutinib. He is not concerned unless I get a lot more. They usually just come and go on my arms.

[tubbing]

My husband gets them, they start as little pimple like spots turn red, then purple. Dr not convinced they are ibrutinib related. Wants a biosopy doing on them to check it out

[lankisterguy Administrator 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 it got visibly worse, but Ibrutinib made it much worse- angry red & itchy.

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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 over 200 (unlocked) replies that mention skin issues and CLL:

healthunlocked.com/search/p...

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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

[barger1951]

Yes, I get them too. I also had them on my lower legs, those would not go away. I too was on IBR for over 2 years, I am currently off IBR for the last 3 months and will not go back if I do not have to. I am off because of other medical issues (bladder cancer treatment). Since being off IBR, my skin spots have gone away and of coarse I feel better. That is not to say that IBR did not save my life, it did, but it sure is nice to take a vacation from it. All my numbers improved after being off IBR even when treating my bladder cancer so my doctor is in no hurry for me to resume.