My 65 year old husband has CLL with p53/17 deletions. He has been on Ibrutinib for almost 3 weeks now. He takes 2 pills at night. His strength has returned. His fatigue is gone. He no longer sleeps 15 hrs a day. His legs no longer swollen. He has energy to go to his shop and change oil in the four wheeler.
He has forgotten to be really careful on the sun this past Friday on a day fishing trip. Although he was in the shade of a cabin on the boat.
What's scaring me is the rash developing on his face and neck. Has anyone else had rashes develop and what were your experience. I sincerely appreciate any words of experience for us.
Thank you
Farrpottery
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Farrpottery
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Rashes are pretty common. Mine were the worst at 4 months of treatment. They have lessened since then, with a slight flare--up every now and them.
I've been to the dermatologist, no solution, just time.
This has been the first time in my life I've used foundation makeup. Don't know if your husband will go for that!
If it gets worse, itches, looks infected... off to the doctor.
Virginia
Hi
51 yo husband also started ibrutinib 2 months ago. He developed bad rash on his face . clindamycin gel 1% seems to help his skin
( I am not a MD)
and yes, he has energy to do things. first time in last 10 years
good luck
below is management of skin rash of EGFR inhibitors (not ibrutinib)
ibrutinib has off target EGFR inhibition effect
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Papulopustular rash
Papulopustular rash is the most common cutaneous adverse effect Although terms like acneiform, acne-like and even acne have been used to describe this rash, it differs from acne from the clinical, histopathological and therapeutical point of view. The rash manifests itself by folliculocentric erythematous papules and pustules that predominately affect seborrheic-rich areas (scalp, face- particularly the nose, nasolabial folds, perioral region, upper trunk and “V” region of the neck and chest). The periorbital region and the palmoplantar surfaces are usually spares . Unlike acne, there are no comedones, lesions can extend to the lower trunk, extremities and buttocks and can be associated with pruritus, pain, stinging, irritation The onset typically occurs in the first two weeks of treatment, but it can vary from as early as 2 days to as late as 6 weeks
The rash evolves through four stages
- First week: dysesthesia with erythema and edema
- Second and third week: eruption of papulopustular lesions
- Third and fourth week: crusts formation
- One month and longer: persistent erythema, xerosis and telangiectasia in the area affected by the rash
The evolution of the rash is characterized by waxing and waning of lesions. The vast majority of patients present partial or complete resolution of the lesions despite continuing the treatment . Complete resolution can be seen 4 weeks after treatment discontinuation
General measures include avoiding sun exposure, hot showers, lotions that contain alcohols, perfumed soaps and detergents and the use of broad-spectrum sunscreen with SPF >30 and moisturizing creams twice a day
Prophylactic treatment with oral tetracyclines (doxycycline or minocycline each 100mg twice a day) together with low-potency topical corticosteroids twice a day on face and chest for 6 to eight weeks
The severity of the eruptions guides the approach to treatment
Patients with grade 1 eruption can receive low potency topical corticosteroids and topical antibiotics (clindamycin gel 1%; erythromycin gel/ cream 3%; metronidazole cream/ gel 0.75%-1%) twice a day for 4 weeks. Patients are reevaluated after 2 weeks, and if the eruption does not improve, they are treated as those with grade 2 eruption.
Patients with grade 2 rash require low potency topical corticosteroids twice a day on the face and neck and fluocinonide cream 0,05% twice a day on chest and back, in association with tetracycline (doxycycline 200mg per day or minocycline 200 mg per day) for 4 to 6 weeks. Doxycycline is safer especially in patients with renal impairment and minocycline is less photosensitizing.
If the patient was already on an oral tetracycline, he can receive a first generation oral cephalosporin (cephalexin 500mg twice per day, cefadroxil 500mg twice per day) or trimetroprim 160mg/ sulfamethoxazole 800mg twice per day for 4 weeks.
Patients are reevaluated after 2 weeks of treatment and if no improvement can be found, they should be treated as those with a grade ≥ 3 eruption.
Patients with grade ≥ 3 eruption, intolerable grade 2 rash, rash that interferes with self-care activities – adjusting the dose until the rash improves to grade ≤ 2; accompanied by oral antibiotics such as doxycycline 100mg twice per day or minocycline 100mg twice per day, first generation oral cephalosporin (cephalexin 500mg twice per day; cefadroxil 500mg twice per day) or trimetroprim 160mg/ sulfamethoxazole 800mg twice per day for 4 weeks in association with oral prednisone 0,5 mg/ kg up to a maximum of 40mg/ day for 7 days. Patients are reevaluated after 2 weeks of treatment.
Refractory grade ≥ 3 rash oral tetracycline are discontinued before starting low dose isotretinoin (20-30mg per day) for at least two months A significant improvement can be seen after 4 weeks [34]. Isotretinoin may cause or aggravate xerosis, photosensitivity and cheilitis. Emollients and photoprotection may improve some of these symptoms.
Rashes with Ibrutinib are relatively common but another common cause is allopurinol and if your husband has just started treatment then he may be taking that as well.
My allopurinol rash was quite spectacular and followed exposure to the sun too. When I stopped the allopurinol the rash quickly subsided.
You need to check with your doctor, they will have seen rashes like this and before doing anything as topical treatments may affect the ibrutinib and you may need the allopurinol.
My husband’s been on Imbruvica 420 & Allopurinol for 3 months. He has broken out with several patches of rash all over his body. How long after you started Allopurinol, did your rash present itself?
Hi, I'm a 70 year old female, diagnosed with CLL 26 years ago. In January of 2009, I was diagnosed with End Stage Lymphoma. Dozens of blood transfusions & 5 months of harsh Chemotherapy (RCHOP) saved my life. In February of this year, after 26 years in remission, the CLL rose it UGLY head. I am currently on IMBRUVICA (aka Ilbrutinib). I have very few side effects. However, last month I visited my daughter & her husband in the Florida Keys. Too much fun in the sun caused a horrendous petechial rash on my legs. The swelling & discomfort lasted approximately 3 weeks. Vitamin E cream, purchased at Walmart, was the only relief.
WOW, Maggie - you are an inspiration to everyone with CLL. Thank you for sharing your history with the disease. I will get some Vitamin E cream posthaste. Carole
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