BR and Skin rash

[Haider98]

20 days after the first cycle, my father has developed a rash over entire body. Did anyone else experience this?

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

- 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 over 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 father's 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 his rash will be part of that care.

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Len

[Haider98 in reply to lankisterguy]

Dermatologist has prescribed him antiallergic and corticosteriod lotion.

[LovecuresCLL]

Erythroderma? Red all over? This may be a drug rash. Hypersensitivity reaction versus other. Get dermatology consult. Looks at all meds you are on including B and R. Ask CLL specialist.

Wish I could help more.

Way to stop drug rash is to stop drug.

How much BR to go?

Good luck .

Best wishes to your Father,

-John

[Haider98 in reply to LovecuresCLL]

5 more cycles. Rash is basically on the entire body, small red dots.

[LovecuresCLL in reply to Haider98]

“Red dots” can be petechiae. Platelet count? Are platelets low?

Hard to say without a photo.

Ask for dermatology consult.

[Haider98 in reply to LovecuresCLL]

Platelet counts are normal.

[LovecuresCLL in reply to Haider98]

Okay

[eric72]

Yes I did. The rash developed 10 days after treatment and I had a high temperature along with it. Needed IV antibiotics at the hospital ended up in there for 4 days as they suspected it could be Sepsis. Thankfully it wasn't all tests came back clear. They later told me it was a side affect of Retuximab.

[LovecuresCLL in reply to eric72]

Very possible that is true. So it cleared up on its own because they already stopped the medication. Did they give you steroids?

[eric72 in reply to LovecuresCLL]

I never had Steroids, as you say it cleared up on its own really. I always wondered why they never told me about the side affects of the Chemo. Most of the doctors I saw at the hospital didn't seem to know and only a couple told me it happens sometimes.

[Big_Dee]

Hello Haider98

Yes, my rash showed up about 10 days after first treatment of B+R. Rash was on chest, back of neck and some legs/arms. It itched for about 2-3 days. I used triamcinolone acetonide cream, which cleared it up before next treatment. After that first bout, rash did not show up again, but did have 30 spots looked like cigarette burns later. Blessings.

[Haider98]

The rash has worsened. Plus he has on and off high fever with rash. The hospital admitted him. He getting culture's done for rubella, measles and mumps. Moreover IgG and IgM antibdoy levels test. The doctors wanted to monitor him closely. Hoping for the best.

[Jemorgen in reply to Haider98]

Holding you and your dad in my thoughts and prayers; wishing him comfort and relief.

[attarintiki]

Hi Haider98

To share with you my experience, 2 wks after my second BR (15 Feb) I had developed severe skin itch, bumps in my face forhead, cheeks. neck chest. Suspected that I had parasitic reaction (Strogyloidosis) to chemo my stool and blood were repeatedly examined resulted negative. However I was given Ivermectin and Albensdazole that gave me very little relief. Thereafter a skin biopsy revealed diagnosis as Eosinophilic Folliculitis (Ofuji Folliculitis Disease) reaction to Bendamustine. I am still coping it with Topical steroid creams and antihistamines. Not that your father has similar disease, but you can share/discuss these details with your fathers Heamo-Oncologists.

Wishing your father a speedy recovery.

[Haider98 in reply to attarintiki]

So did you continued with bendamustine or changed your treatment?

[attarintiki in reply to Haider98]

No more BR treatment as I am reactive. I am on short remission for time being. If CLL relapse I may be given ibrutinib till then i am on w&w