Rash that won’t go away

[Louie_CC]

I thought I’d share a picture of a rash that’s now over 2 months old that my CLL and GP doctors have no answer. They say it’s probably a reaction to the drugs. I’m on the Pirtobrutinib , Venetoclax, Obinutuzumab trial for Richters. The rash looks like a salmon color bruise. It doesn’t hurt, itch, or change in size. There is no other rash on my body. It’s a curiosity that I wonder if anyone else has experienced?

[Walkingtall62]

Hi, I was recently bit by a horsefly. Initially just the bite, but it evolved a little like this over a few days. Very itchy and felt like tiny barbs were sticking in me at times. Doctor gave me Fusidic cream. Almost gone.

[scryer99]

Had rash problems 3 months after treatment onset with a similar regimen (zanubrutinib / sonrotoclax). My CLL oncology team was mystified but had the good sense to refer me to a dermatologist specializing in oncology.

The verdict was TEC, medicalese for "rashes caused by oncology drugs". The mechanism is not well understood and varies by treatment regimen, but the current theory is that as cancer medications build up in your system, perspiration ejects these medications onto your skin, causing various skin issues. Steroidal ointments and antihistamine regimens can be effective in treatment and are compatible with cancer treatment.

A little more on this here: healthunlocked.com/cllsuppo...

[opal11uk]

Have you seen a dermatologist ?

[Louie_CC in reply to opal11uk]

I have an appointment in Oct for my 6 month check. She’s at MDA so can shed some light. I think I’ll send her a picture.

[opal11uk in reply to Louie_CC]

She is the best one to advise and treat, Good luck x

[cartwheels]

I used to get this rash same place in my first few years on Ibrutinib

[carnvellan]

I got the same rash with Venetoclax. Steroid cream helped with it.

[Louie_CC in reply to carnvellan]

I put cortisone cream on it for a few weeks. It made no difference. Strange.

[Shefflass]

I had a small patch on my arm with Venetoclax. Red with slightly raised little bumps. No pain or itching. It disappeared a few weeks after stopping the Venetoclax.

[akirsch973]

I have been taking zanubrutinib (Brukinsa) for 6 weeks. At around Day 12, a similar rash developed on top of my head. There is no itching. My CLL specialist told me that the rash will likely persist while I am taking the medication and that I should not be concerned about it. He added that I could apply betamethasone cream to the area if so desired.

[lankisterguy Volunteer]

Hi Louie_CC

I have experienced Petechiae and occasionally mildly itchy skin and plaque psoriasis since 2006, but Ibrutinib really made the rash strongly itchy.

-

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 a top expert skin pathologist 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.

-

Our archives have over 441 postings that mention rash:

healthunlocked.com/cllsuppo...

-

And over 1,077 postings that mention skin issues and CLL:

healthunlocked.com/cllsuppo...

-

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".

Here is a 2023 article on how the immune system reacts to skin injury or causes autoimmune reactions:

the-scientist.com/news-opin...

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).

daavlin.com/patient/uv-phot...

-

I obtained a home unit in December 2020, it's 2 meter/ 6 ft high with 8 special fluorescent bulbs see:

daavlin.com/product/patient...

-

Len

[Louie_CC in reply to lankisterguy]

I read a lot of post about rashes. Most have severe itching and complications to the skin. Mine doesn’t itch or peel. It just a reddish bruise like splotch that I’m curious about. Fortunate it’s not causing me a problem.

[DoriZett]

I haven't dealt with rashes Louie_CC but am wondering - is that the site on your arm where the infusion goes in?

[Louie_CC]

thanks for reply. I get a monthly infusion and it’s usually in my forearm below the elbow. Last 2 times in opposite arm.

[StBon]

Have had the same rash for 2+ years on both forearms. It is a reaction to the Brukensa/Zanibrutinib I take., Reduced dose 6 months in to see if that helped. It did not, but cut the cost substantially with no change in excellent results. I say worth a cosmetic problem. Best to you.

[Stamphappy]

Louie, thanks for posting this. I'm in watch & wait yet but have itchy palms that refuse to heal the top layer of skin. Super tiny slightly raised spots come & go. Palms appear red & shiney. I've been prescribed steriod cream for it, but that only led to it splitting open & discontinuation. Nothing seems to help.

[Bobby9toes]

I get red splotches on my face, mostly my cheeks. They don’t itch at all. They fade, then come back. I’m on one tablet of Acalabrutinib a day for SLL. The rashes started around four months after starting it. After showing it to my oncologist, she seemed surprised to see it and will bring it up with her team.

[whitewsu]

I have had a few (one-spot) rashes. The one on my cheek is still here. I am not currently on medication. It doesn't hurt and mostly is not bothersome--although sometimes it itches. I had one on my foot and one on my arm, but they seem to have gone away. I hope you find out what is wrong.

[Mother1943]

hello Louie

I have been on ww for over 20 years now.

Last few years on IVIG monthly. A few months ago after my monthly IVIG infusion, days after, I developed a rash on, mostly, forearms. Some spots on upper arms and legs.

Not itchy mostly. Has changed a little in color, but still there. Thankful not on my face.

Oncologist doesn’t know what it is, said I should see a dermatologist.

Saw a dermatologist, thought it was eczema or psoriasis. Sent a picture another time said it was a sunburn??

Have a new dermatologist that I haven’t seen yet. So, no idea what is wrong?? Hopefully new dermatologist will have an idea. But, appointment is not until December.

[Louie_CC in reply to Mother1943]

It’s more of a curiosity to me since it doesn’t hurt, itch, or in a place that’s easily seen. I posted because if it’s a sign of anything bad, I want to be proactive. I see a dermatologist the end of October.