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The Isolation of Efudex

The Isolation of Efudex

If you are one of the many people visiting a dermatologist regularly, you will eventually meet up with the term actinic keratosis. Hopefully, your experience will be limited to seeing the words printed on one of the dozens of informational pamphlets in your doctor’s office. If you are one of those told to treat actinic keratosis on your skin, you may be prescribed Efudex. According to The Skin and Wellness Center, “Over 14 million prescriptions have been written for Efudex over the last 30 years.” If, indeed, you are one of the millions told to use this topical chemotherapy to rid your skin of these precancerous spots, there are some things you should know–things a physician may not think or know to mention.

Emotional impact

You may be fortunate enough to only require spot treatments with Efudex. In this case, your side effects may be very mild. Should you be told to treat a larger area–an area that is difficult to hide from others–you may find yourself struggling emotionally. As a regular user of Efudex, I can tell you that fighting to hide the redness, irritation, and my own discomfort is half the battle. For me, there is a mental impact that hits hard and runs deep.

Each year for the past four years, I have treated either my chest or face twice daily for three to four weeks at a time. The first time I treated, I knew no one else who had even heard of Efudex and went into the experience completely blind to its side effects. From start to finish, I spent four weeks treating and about two weeks of healing wondering if what I was feeling was normal. Many hours were spent second guessing myself, and I wore myself down emotionally trying to decide if I wanted to face the outside world or stay inside and avoid the questions and stares.

The isolation is real

Mingled with the itching, burning, and seeping sores is an ever-present feeling of isolation for many of us. Especially when treating my face, I found it difficult to face my children. My face, easily referred to as my own version of the “Masque of the Red Death,” kept me confined to the house much of last summer. Loneliness overwhelmed me at times. Talking was impossible during the latter part of treatment when my skin was drawn tight and cracked if I tried to speak. Eating and drinking were extremely uncomfortable and necessitated straws and liquids. I desperately missed enjoying being out with my children. Weeks went by as I treated and healed and languished in my own thoughts. It is a truly trying ordeal. I have heard from countless other users of Efudex who second my emotions.

You are not alone

We use the phrase “you are not alone” in many different situations to show support, but it sometimes falls on deaf ears. Telling you that are not alone is not as effective as showing you that you aren’t. A quick search for “Efudex users” leads you to a lengthy list of stories, images, and forums for people just like you. Social media pages are filled with patients in the throes of using Efudex–old pros and newbies alike. During my second year of Efudex treatment, I stumbled across a support group on Facebook for users of fluorouracil (AKA Efudex), and it changed my entire experience. Though I still endure all of the side effects, I found an incredible group of supportive and caring people who know exactly what I feel and think with regards to these intense and difficult treatments.

There are thousands of people out there feeling the same isolation, flooded with the same thoughts, and battling with the same emotions you are feeling. You are NOT alone. You don’t have to wonder if what you are feeling is normal. You need only reach out to us. We are here for you!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The SkinCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Bridget7050
    5 months ago

    Thank y’all for the replies on my question! I havent had time to be online so justnow saw them. I know that different derms have different opinions on this, & i dont have the money to see different ones for second opinions so ive been weeding through internet lol, have read lots of articles concerning the peels vs efudex, some saying one is as good as the other but most just explaining how each works..so nothing concrete. Ive done the tca peels at home, was told do NOT, but im very careful & have seen good results..under $50 doing it myself vs hundreds in office…ive mostly done them for cosmetic resurfacing but have recently done both my hands, ak’s & brownspots are very much lessened..texture of my skin is also much smoother..im 45 & lots of sunning on fair, freckled skin has caused crepiness thats looking way better after peeling..i dont know if efudex removes deeper levels because i havent tried it long enough..i used it on spots on my face & my hands last year but stopped in 3 days because i felt nausea & headaches ..because of that, i KNOW i’ll be in a MESS if i do large areas that my derm wants me to! I was supposed to have used it 2weeks & saw her, but i havent been back..have an appt with her next week, hoping she wont hold it against me. My whole upper back & chest, hands & fore arms plus a few areas on my face were to be treated, she told me do NOT do tca peels myself, so will probably refuse to continue seeing me if i dont use the efudex OR have HER do the peels in office which i cannot afford..i want to have a good dr overseeing me because i already had a basal removed from my back last yr & was told now im high risk & should be seen every 6 months! Maybe she will see my view & help me out here…gosh i wish id known this would be my life during all those sunbed sessions!!!

  • April Pulliam moderator author
    5 months ago

    @bridget7050…I’m with you. I’d take back every tanning session and every unprotected hour in the sun if I could. This is certainly not the life we envisioned.

    As far as the peels vs. Efudex, I understand the hesitation and the concern over price and side effects. Efudex costs me around $40 for a tube and one tube lasts me several rounds. I can use it for a large area and have enough left over to treat a large area again in several months. I’m not sure how that compares with what your price might be.

    Side effects are another story. I experience nausea and headaches as well. Side effects vary from person to person and can be managed with your doctor’s help. Ginger is said to be helpful with nausea and I use Tylenol for the headaches. Doctors can prescribe something for you if side effects grow too frustrating for you.

    I’m glad you have had luck with the peels, but I’m afraid your status as high risk makes it necessary to see a doctor regularly. Don’t put off those appointments if at all possible.

    I’m including a link to a piece on using Efudex and some tips for users.

    https://skincancer.net/life-with-skin-cancer/tips-for-efudex-users/

    Please keep us posted! We know your struggle and are here for you any time! April, Skincancer.net, Moderator

  • Mary-Therese
    5 months ago

    I love this informative sight. I have 3 generations of Skin Cancer history. Doctors are now saying I have a reaction to Efudex after being treated several times. I notice doctors seem to have different opinions.
    2006 I did my full arms x2 daily, Dr, said to cover them with glad wrap. They turned green like guacamole and the dermatologist had left.
    2017 and no available dermatologist on island. I had a gut feeling of something. So treated spots on my arms, shoulders, chest for 6 weeks. My neck 2 weeks which swelled bigger than my face and oozed. When a visiting dermatologist came for a week. I was diagnosed with melanoma on my back which I couldn’t see. Have be seeing dermatologist every 3 months for last 2 years.. Had 8 Invasive Squamous Cell surgeries in 2018. I just did full face Efudex for 3 weeks. Dermatologist said to stop for 2 weeks after I emailed photos. She it was too intense and I was having a reaction. After I saw her she said not to continue and just rest from treatment and see a dermatologist in 6 months. She no longer provides services to public. So far in 2019 I have had 5 Squamous Cell surgeries and currently on a 2 week wait for 3 bio’s. There were more red spots Dr said if bios came back positive those others close by would be positive. I seem to have been getting cluster groups are close together on my legs. With Efudex treatment this time I experienced dizziness, nausea and severe vertigo when my face was swollen and wrinkles disappeared. My question is do other people have an intense reaction to Efudex where doctors say to stop? Has anyone else experienced sudden onset vertigo? Dermatologist said it’s not related but Chiropractor said swollen face could easily affect inner ear as they are next to each other. Does anyone else have a lot of on going surgeries? I live on island of Guam half way between Japan and Australia where we lack a permanent dermatologist so it’s a bit scary having so much skin cancer activity. I went to Hawaii for 3 Moh surgeries on my face and 2 on my leg last Nov/Dec. For 19 years a plastic surgeon has done great surgeries on back, chest legs. More recently Dermatologists have been doing the scrape and burn technique which I just read here may not be as effective with recurrent skin cancer.

  • April Pulliam moderator author
    5 months ago

    @mary-therese…I don’t even know where to begin! My heart just breaks for you! I can’t imagine being isolated from reliable and convenient health care. I know you must be extremely nervous about recurring spots.

    I’ll address the vertigo first. What I and many other users of Efudex have learned is that anything goes. There are so many side effects that doctors don’t always think to warn us about and many that they don’t believe are related to Efudex–but we know better. I haven’t experienced vertigo while treating, but I have talked with other users who have. Don’t discount it just because your doctor hasn’t encountered others who have had the same side effect.

    As far as the swelling you have had, I have definitely seen many users who have intense swelling, especially in the face. Some have even been asked to stop treating as the swelling and other issues together indicated infection or allergic reaction. If Efudex is what your doctor continues to prescribe, I would be inclined to spot treat and not treat large areas at once. I have had good luck treating this way and side effects are minimized.

    I am including two other articles here on our site dealing with Efudex that you might find useful. In addition, I am including a link to a closed group on Facebook I encourage you to join. I am a member, and have found it a great comfort.

    https://skincancer.net/life-with-skin-cancer/tips-for-efudex-users/

    https://skincancer.net/life-with-skin-cancer/efudex-side-effects/

    Here is the Facebook group: https://www.facebook.com/groups/191070307590515/

    Don’t forget you can always use the community section here to connect with others who are going through similar dilemmas. https://skincancer.net/community/

    We are always here for you! Sending you hugs! April, Skincancer.net, Moderator

  • April Pulliam moderator author
    5 months ago

    @bridget7050…you raise a really great point regarding the time it takes to treat. I’m not versed in chemical peels, but my guess would be that they lack the medicinal aspect you find with Efudex and other topical creams used to treat precancerous spots. Efudex itself is a form of chemotherapy, and I’m sure that’s why my dermatologist chooses it over other options. Thanks so much for raising this question! April, Skincancer.net, Moderator

  • Bridget7050
    5 months ago

    Hi ☺ im curious why chemical peels cant be used instead of efudex..to my understanding they do exactly the same thing, remove the outer skin layer, but with peels having days of downtime vs efudex having weeks…i dont know enough about all this to know if efudex does anything better than peels..do you??

  • Nina M moderator
    5 months ago

    Hi @Bridget7050, this is a good question! I tried to find comparisons of efficacy, but I wasn’t able to find a good side-by-side. This study was the closest I could find, talking about Efudex’s long-term efficacy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2989823/. I also found a study that talked about combining treatments: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3549675/. This article talks about chemical peels: https://skincancer.net/treatment/procedures-surgery/chemical-peeling/. I’ll keep an eye out for further resources, and let us know if you have a chance to ask your derm! – Nina, SkinCancer.net Team

  • gypsybythesea
    1 year ago

    thank you so much for this article, I am following you.
    I am day 4 of recovery, first time ever doing this, OMG>>>>>>

  • April Pulliam moderator author
    1 year ago

    Hi there,
    You are finished! You made it through! If you are in day 4, you are likely almost done with the hardest part of the entire treatment. Recovery is always the toughest part with the tightness, burning, and itching. There really is nothing like it. I’m so glad you found this community. It’s a wonderful place for support! Here’s a piece I wrote with tips for Efudex users. https://skincancer.net/life-with-skin-cancer/tips-for-efudex-users/

    Keep us posted on your results! Know that the worst is behind you! Sending you gentle hugs. April, Skincancer.net, Moderator

  • Brenda
    1 year ago

    I’ve used it for years but when I put on face it burned my face skin come off and all of the above went back to my dr and he said use every other day and add a little moisturizer to it . And that worked better for me may have taken a little longer but was worth it I use on the rest of my body full strength .

  • April Pulliam moderator author
    1 year ago

    Hi Brenda,
    I’m sorry you had to have that first horrible experience with Efudex. It is such a strong treatment and so painful for so many. I’m glad the moisturizer/med combo worked out so well for you. I can imagine it would take quite a bit longer but worth the results in the end. Thank you for commenting and giving readers an idea of what worked for you, as well. Best wishes for continued clear results! April, Skincancer.net, Moderator

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