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Long term effects of Efudex on face, top of head, neck and arms

I used Efudex about 12 months ago to treat AKs and other skin cancers on top of the head, face, cheeks, neck, and arms from elbow to knuckles of hands. Twice a day for 4 weeks. Excellent treatment and overall very pleased. Somewhat painful but I completed the treatment. Now a year later I still have redness and irritation in the exact same places where the Efudex cream was used as treatment. I am now having episodes of itchiness, redness, dryness, weeping eyes, and blisters on my ears as I now am allergic to fragrances and Amidoamines (found in many moisturizers, creams, and sun protection products). This was recently found by a Patch Test. Now I use the ACDS CAMP site to identify safe products that I am not allergic to. Now I am having recurrent flares every 4 weeks and using Cortizone and Triamcinolone very sparingly to try to control them until I can see my dermatologist in March.
Does anyone know of long-term treatment for this allergic condition in the exact locations where the Efudex was used? It seems the Efudex 'changed' the nature of my skin and is now allergic to many items. Looking for a long-term solution so I can have a more normal life. Appreciate any direction or info or sights to understand what to do. Thank you.

  1. Hi - thanks for sharing your story here and coming to our community for support. I'm glad to hear that your experience with Efudex was overall pleasing during your treatment period. That said, I am sorry to hear about the side effects you're just now starting to experience. From reading other community members' experiences, Efudex treatment can be unpredictable and, in many cases, brutal during treatment and healing. I'm curious - has your doctor or dermatologist weighed in at all on the side effects you're experiencing? While we are unable to provide medical advice, I did want to share our topical chemotherapy content hub with you, which hosts a lot of great content around Efudex that may be helpful to read: https://skincancer.net/topical-chemotherapy-guide. Hope this helps! Please keep me posted on how you're doing. All the best, Alexa (SkinCancer.net moderator)

    1. Thanks for your message and information Alexa. Yes my dermatology specialist have been except in navigating this process post (one year after) Efudex. Yes it is unpredictable!!! They were the ones who recommended the Patch testing a few months ago and the ACDS CAMP App to find 'safe' products. I am due to return to see them in March when I return from a three month trip so we will see what they recommend on further treatment for these 'flare up' episodes. There does not seem to be as much long term (one year onwards) medical info on the impact of Efudex 'denaturing' issue. Much of what I have seen is a slow and gradual improvement of the skin area that Efudex was used on. I was trying to understand and connect with others who have had a similar experience of longer term and allergic reactions from fragrances and Amidoamines as a result of using Efudex on specific areas of the body (head, face, cheeks, neck and arms) as I have now experienced. Best regards and any info would be much appreciated. CampbellB

      1. Did you treat all of those areas at once? Or successively? If at once that would be a VERY large area and probably more than the recommended maximum and might have caused some kind of systemic reaction (amateur guess).


        I’ve done about 10 treatments over the past three years ranging from face, scalp, neck and ears to arms torso and legs. But the weirdest one was my scalp; after I finished, with a very severe result, I ended up with some persistent sores that took ages to resolve. In two cases, they didn’t resolve at all and I spot-treated them, with good results. So I’m thinking that these were deep/more severe AKs or even actual cancers.


        Some other areas - mainly torso - have seen additional spots/AKs develop post-treatment. Sometimes I wonder if the treatment promotes these or whether they’re just more obvious on the post-treated skin. (One topical - Picato - has actually been withdrawn in Europe because treatment tended to result in the development of skin cancer!)


        1. I had to use Efudex on my scalp due to having several squamous cell cancers and my Mohs surgeon was concerned due to my scalp being tight and difficult to close after the first two were surgically removed. Twice a day for a month was the instruction for Efudex use and if you have used it on your scalp, you may have experienced the same oozing and misery that I did.


          Unfortunately, while the treatment actually cleared up one of the two remaining cancers, the second one grew.


          As a rsult of the surgery and the Efudex treatment, I have a bald spot of about 2/2 to 2 inches in the center of my head. I haven't developed new allergies, but as you can imagine, the hair loss is unpleasant. But, the cancers are gone and since my father died of squamous cell cancer from delayed treatment of skin cancers, I figure I am ahead regardless of the bald spot.

          1. Thank you for sharing your story, . I'm sure it will be helpful for many of our community members to read about your experience and know that they are not alone. I am sorry to hear about the hair loss as a result of your surgery and treatment. But I admire your outlook of being ahead. You're right - it's best to catch these cancers early and seek the best treatment available to you. I'm sure your father would be proud to know how you are taking care of yourself! Wishing you well, Alexa (SkinCancer.net moderator)

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