Eczema

[Murman]

Hi

I have CLL and started Ibrutinib on July 14th at 3 pills per day. The good news is the lymph nodes in my neck have disappeared but WBC remains relatively the same at 243 and hemoglobin and platelets continue to drop. Platlets from 130 to 106 and Hemoglobin 13 to 9.0

I also have minor red dots show up on various parts of the body periodically but they seem to disappear within a few days. Eczema/rash on the back of my leg that started shortly after starting Ibrutinib about the size of a dime and has grown to about 3 inches by 3 inches currently. It is also very itchy. Other minor irritants such as cold sores occurring more frequently, severe reaction to bug bites and bruising from minor bumps.

I live in Ontario Canada where all of this medical treatment including the Ibrutinib is free but find dealing with the administrative side of medical appointments and testing extremely challenging.

Any comments or thoughts from the CLL community would be appreciated.

Thanks

[lankisterguy Volunteer]

Hi Murman,

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What you are describing is not unusual for Ibrutinb, the nodes disappearing but the ALC / Neut# not dropping quickly, is often reported in the first several months. As you move through the next 6-12 months, your Lymphocytes should decline and as your bone marrow clears, the Platelets and Hemoglobin should start to recover.

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Ibrutninib is known for altering hair and fingernails, skin issues are also often reported. I have had eczema/psoriasis like problems that started 2 years before my CLL diagnosis in 2008 and continue to today. Ibrutinib made it really angry & itchy.

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When my skin is unbearable, I use a topical steroid for a few days and then switch to a top quality moisturizer to keep the irritation under control. I got excellent results from photo therapy- light box treatments that are used for severe psoriasis.

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I had many skin biopsies over the years, and FLOW cytometry on them found the CLL cells and T cells are clustered in a specific layer of my skin, as is found with Psoriasis, but like many autoimmune symptoms/diseases, the doctors don't really know why.

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Len

[Murman in reply to lankisterguy]

Ok thanks I will try and be a little more patient with the blood results. Thank you for the direction on the eczema/psoriasis problem I will give that a try. I assume the treatment you described is performed by a dermatologist.

[lankisterguy Volunteer in reply to Murman]

Constulting a dermatologist is the best route, it can be coordinated with the full body skin exams that we should have at least annually

I get a full body exam every 6 months since I have had some cancer removed from my skin already. We CLL patients have 5 to 8 times higher risk for skin cancer. Early detection is the best means to prevent seeminingly insignificant small spots from getting far deeper and more dangerous.

I have a prescription for Triamcinolone Acetonide Topical webmd.com/drugs/2/drug-1456...

a mid strength cream aafp.org/afp/2009/0115/afp2...

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In the USA we can purchase the milder hydrocortisones over the counter without a prescription.

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For moisturizers I use CeraVe or similar greasless creams.

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Len

[Murman in reply to lankisterguy]

Thank you for the URL connections.

I normally see a dermatologist in Florida once a year who does the full body scan and it is great service. However we Canadians are not allowed to travel to the US at the moment without having to be quarantined upon our return. Where we live in Ontario Canada we need a referral from our GP to see a dermatologist and that can take a long time. It is a trade off as all the appointments and most medication are free but you wait in line a long time to see a specialist. I will start that process with the GP on Monday

[SLK250]

Hello Murman,

When I was on FCR I developed 2 or 3 patches of eczema and after consulting a dermatologist I started using a product called Diprobase. It calms my eczema down quickly and, in the UK, is available over the counter.

Kevin

[Murman]

Thanks I will investigate the possibility to purchase in our area