Blotching of Face

[Audrey10]

I am a 70 year old male who has been on Imbruvica for 16 months. For the most part the meds have had a positive effect.... lymph nodes 50+ percent down in size, white blood cells reduced to normal guidelines. Besides easy bruises and ease of bleeding my biggest issues has been bleeding and blotching on my face... it comes and goes. Anyone else have anything similar? Any suggestions to how to treat this? Thanks..,

[lankisterguy Volunteer]

Hi Audrey10

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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 6 months of Ibrutinib made it much worse- angry red & itchy.

After pausing for a month and restarting the rash came back and I had to stop Ibrutinib permanently. I am now on Venetoclax and have far less skin issues, but still get some skin issues in cold dry weather.

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I also have lots of seborrheic keratosis that seem to wax and wane along with the red dots and rashes. Over the years I've had many biopsies; dermatologists and pathologists postulated Psoriasis, Eczema, drug reactions, and more recently CTCL or Mycosis Fungoides.

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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 500 replies 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".

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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.

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Len

[Audrey10 in reply to lankisterguy]

Thanks, I think....do have a dermatologist appointment later this week. Also had melanoma 8 months ago so am getting body scans quarterly.

[country76]

I also have a blotchy face, I am going to make a derm appointment. The last time I did they went away before my appointment. They seem to be here to stay. I also have the rash mostly on legs, doesn't it. I take an allergy pill once a day. I am in my 7th month of Ibrutinib.

[LovecuresCLL]

Blotchy sounds like bruising. I am sorry this is happening.

As I reported to the followers on this site I have horrible skin and break out in every kind of conceivable lesion all over my body (except groin thank goodness). My CLL doctor says it’s a paraneoplastic problem due to “sticky” antibodies 🍯. They stick to things they shouldn’t (autoimmune) causing these problems on my skin.

It is subsiding with the treatment (O plus V) very very slowly. I got a compounded cream from my derm with fours things in it shingles med,doxepin, gabapentin and lidocaine. I use hydrocortisone cream too. I dab it on every lesion. I got a bruise on the end of my big toe.

I know what you are going through because I don’t like getting stuff on my face cause it is so visible to everybody ....you cannot hide it.

You need a good derm. I only worry when it blisters and excoriates because that can be shingles. I take vancyclovir pills to prevent shingles which is really the big worry. If a break out happens and it’s NOT shingles I am glad.

Bugs are to be avoided ....major priority for me.

Good luck with your derm. PS. Take photos of lesions to show dermatologist ....they may have a better idea in case it starts to resolve by the time you get an appointment.