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Alert Number 168

Summer Is Here — and So Are Skin Cancer Worries

Date: June 16, 2006

Summer is here, and with the good times of summer comes increased risk of skin cancer. Trust me, if you have CLL, you do not want the added complication of skin cancer. Pardon me for being a party-pooper, but have you seen this recent post on ACOR? Charles has been along standing member of CLL Topics, and he took our advice about skin cancer seriously. But even with his proactive efforts to protect himself, the results are a horror story.

Thu, 15 Jun 2006

The point of this note is that even though we may learn to be proactive because of our CLL, even that may not be enough. Frustrating!! For some years I had a dime sized bump below my ear. I was about 1/8 inch thick, and grew thicker and then subsided, repeatedly. I showed it to 3 dermatologists, and 3 regular doctors over the years. None said there was cause for alarm. About 2 months ago I decided to have it taken off, due to a wedding of my step-daughter. The dermatologist said an ENT surgeon would have to do it. The ENT said he couldn't tell what it was, but operated. It was a malignant Squamous Cell Carcinoma that was growing down, rather than staying on the surface.

A month later I needed an overnight hospital stay, to remove the rest. I am glad that the pathology report is clear, but am disappointed that I now have 12 inches of facial and neck scars, and a shoulder that needs exercise and strengthening. It is frustrating to point out potential problems, and have them dismissed, in error.

Charles.

I am trying to use this specific example to get one of our experts to write a “Best Practices” article on the subject of skin cancer in CLL.

We have to use every avenue we have to get the information trickle down from experts to the local healthcare provider level happen soon enough to save our skins, literally and figuratively. Maybe, if we have a detailed and blunt “Best Practices” article from a world-class expert, maybe if we wave such an article under the noses of our skeptical local healthcare providers, just maybe they will take the problem more seriously? In the meantime, below are links to just a few of the articles / Topics Alerts on our website that you can read to bring yourself up to speed. (If you want to get the Alerts as they issue, you have to register for them! Registration is free and painless).

I hear different versions of similarly tragic and frustrating stories, week after week. And yet, almost no CLL patient is counseled about the increased risk of skin cancer at the time of diagnosis. No one warns us of the potential risks of exacerbating existing squamous cell or basal cell carcinoma during the course of T-cell depleting therapy (as in fludarabine, steroid and Campath therapy, to name but a few of our favorite drugs). It is bad enough when our patients die because we do not have all the answers. It is downright tragic when we do know the answers, but the information is not trickling down fast enough.

Dying to Get a Tan?
What You and Your Oncologist Need to Know About CLL
Alert 21 - Corticosteroid Therapy and Increased Risk of Skin Cancer
Alert 42 - CLL and Basal Cell Carcinoma
Alert 60 - Squamous Cell Carcinoma
Alert 90 - Aldara: A New and Promising Drug for Actinic Keratosis

Be well,

Chaya
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