After using Fluorouracil cream, has anyone had lasting effects?

...I am sorry your effects seem to be dragging out for so many months. I know you must be incredibly frustrated. I am not a doctor, but I would have to guess that the lengthy healing time is directly related to the severity of the reaction you had.

I treated my lips a couple of years ago, and had a lot of chapping in the weeks following treatment. It was difficult to apply any products, as you well know. I did manage to find a petroleum-free lip balm that soothed my aching lips. Application was the hard part. I warmed a bit of the balm on my fingertips and heated it for a second or two with the hair dryer before applying it to my lips. It was the only way I could spread it evenly without tugging on the raw skin. (I chose petroleum-free because I have had reactions to Vaseline in the past when treating.)

I also recommend you try Vanicream lotion. It is free of dyes and fragrances and is the most soothing lotion I have ever used. Actually, it's my daily moisturizer and was recommended by my deramtologist.

I am not sure how far you are out from your next appointment, but it might be worth your peace of mind to give your doctor a call or send a picture in order to get his/her opinion.

Know that redness and irritation can last for a while in the treated area. It is not uncommon to have flare-ups for a few months following the end of treatment. Heat, fever, and even some medications make my chest turn bright red up to three or four months after I have healed.

I am including an article on lingering redness: https://skincancer.net/life-with-skin-cancer/efudex-redness/

Please keep us posted on your progress and your doctor's suggestions. I am keeping you in my thoughts! Know that you are not alone in your treatment experience!


April, SkinCancer.net, Moderator

(08/19/19) Twice. (10/19/19) The Physicians Assistant, told me it was not Actinic Chilitis, after basically no exam, and she said I was mouth breathing. I told her she was wrong. She told me use AquaPhor. Second visit she told me to use Vaseline. I told her she was wrong in this diagnosis. 10/28/19 saw Dermatology, looked at me a few seconds and told me I had Actinic Cheilitis. I told him, I know. He told me about the treatment he was prescribing and that I would hate it, and out the door he goes. No testing, no follow up. He told me if anyone asked who prescribed this for me to give them someone else's name. I did the Fluorouracil treatment for 12 days followed by a steroid cream. He was right horrible and painful treatment. Returned to Primary care 1/2/2020 to say my lips are still very sore and burning. PA told me it takes time, use the AquaPhor. I returned to the Dermatology office, 01/21/20 he told me sometimes it takes longer and gave me several sample creams to try. Vanicream, plus OTC The visit with him lasted about 2 minutes. I returned again to that office 03/4/20 having had no improvement at all. He had students who did a quick exam, she said she saw nothing cancerous with one of those lights. Dr told me that maybe something else was going on, but gave me more sample creams (eucrisa) to try and said probably one of those would work and was out of the room in less than 90 seconds. I did have an appointment on 3/31 which I canceled because of the virus.
My lips are still very painful, they are sensitive,sore and burn 24/7. Portions of my tongue are also sensitive.
06/29/2020 I found a Dermatologist and made an appointment. He did a full exam, I explained the story about my lips, on how this has been going on for about a year, and I am worried that either I still have this pre cancer condition, or my skin is damaged beyond repair. He decided on a course of Cipro for 10 days He also did a culture.
Return appointment was 07/14/2020. Doctor told me I had a bacterial infection. He doesn't know what.
I don't know if I have some type of plague running through my body or what to think. I saw my Primary Care, Dr 08/11/2020. He mentioned this could be something that was done to my skin during the treatment last year and these areas are beyond repair. He had no solution
On the advice of the Dermatologist I saw in June 2020, I went to a Neurologist, who told me I could have “Angry Mouth Syndrome”. It is a condition that can come from the treatment of Fluorouracil, damaging the nerve ending and destroying tissue. I have no Dr appointments, I'm just living the nightmare!

I have had long lasting effects, i believe, from using flourouracil -- on one side of my face (cheek) I get rosacea-like flushing in reaction to heat; That's manageable but the worse thing is my lower lip - treated several years ago with effudex and had a very strong ulcerating reaction. my skin was never the same, and now I suffer from extreme lip sensitivity, burning chapping soreness dryness, some flaking, especially in hot summer weather but also in cold - I cannot be out in the sun or even light without something covering my mouth (thank you COVID, I don't stand out!) I am sensitive to any sunscreen for lips, and maybe even vaseline. i have been treated with various anti-inflammatory topical meds - halbetasol 10 days and now tacrolimus for 6 weeks, alternating but nothing really seems to work and i feel nervous about using these medications. I wish there was something i could find that is soothing. if anyone has suggestions I would love to hear them.