Week 5 Efudix 5-FU – ‘IT IS OVER’ (for now) – after 4+ weeks of treatment with 5% Fluourouracil.

Weeks 4 & 5 have been the worse by far. The inflammation, pain, crusting and flaking were added to by sleep disturbance. I have been waking three times a night for the last few nights, scratching and picking at the scabs formed across my face. Moisturiser didn’t stop it, not did anti-histamines and anti-inflammatories.

I again asked for advice from the hospital team. My own Doctor was unavailable when I called. I asked how long the treatment should continue. Answer given was, ‘one of the other doctors says that if you are on the twice weekly program it should last 6 weeks, usually’. Not happy with another version of advice on treatment length, I called again and asked for the email address of my own Consultant dermatologist. It wasn’t provided (‘why do you want that?’) – instead they passed a message on for her to call me.

Received the call yesterday – asked her how long I should be applying the Efudix – answer, ‘until May’ i.e. another two months. I made her aware of the conflicting advice from her colleagues over the last month and updated her on my reactions and progress. She was surprised. Apparently it is unusual to have such an immediate reaction to the first application of the cream. ‘You should have stopped’. Why? I made her aware of my own research online, i.e. the reaction was to be expected and I was happy to continue as the cream was doing what it is supposed to do – kill actinic keratoses. My only concern was that I was at another crusting/peeling phase and wondering should I continue applying the cream or halt. ‘Stop using it’ and let it heal for a ‘couple of weeks, then if you still have any areas of skin that feel ‘like sandpaper’ reapply the cream. Or, stop using it and wait until (my review) in May’.

I agreed it would be best to stop now, let it heal and make an assessment over the next few weeks as to whether or not I reapply. However, this is against advice online as regards healing – two months is quoted, not ‘a couple of weeks’. I made her aware that I had applied the cream to other areas of my face and scalp that had previously been treated with the cryotherapy. She advised against that for areas ‘recently treated with cryotherapy’. The eight patches treated with the cryotherapy on my face, ear, scalp and neck were done between May and July 2019 therefore ‘not recent’. Also, it is not unusual for AKs and SCC to reappear in areas previously treated for same with cryotherapy and indeed surgery. Judging by the crusting across all areas where cream was applied, there are new AKs developing or (more likely) the previous cryotherapy was ineffective (the optimum time for application of the liquid nitrogen is 20 seconds – I received a few seconds each patch) at killing existing AKs. Anyway, that’s that for now.

The itching and scratching over the last week has been very difficult to stop. Moisturing, anti-histamines and anti-inflammatories haven’t helped. I started wearing gloves last night – woke up at 4am scratching my face again – I was missing one glove and a lot of skin! Face was rather sore this morning – more anti-inflammatories and losts of moisturiser.

The healing process has already begun.

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Thanks. Hope this is of some use to people out there reading and watching.

https://youtu.be/u8V2cH1kixo

 

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