Just looking for others with premalignancy that won't go away on lips. I am a woman but aware that most with actinic cheilitis are men. I was diagnosed by a skin cancer expert 2 years ago and have tried Efudix at regular intervals and also Imiquimod. My dermatologist says I will probably have to use this cream at 6 monthly intervals for life. But presently she's trying me on short sharp bursts of twice daily applications.
She has explained that it presently only exists at cellular level so she can't remove it. Also she's explained that the risk of it turning into invasive SQC in my mouth is quite high if we don't keep it in check. The problem is that it has so far never been in check - it just carries on responding to the cream and my lips are knackered and horrible after 2 years of using this cream.
As I"m also immune-suppressed for autoimmune diseases I seem to be now finding the cream makes me feel wiped out and I'm good for not much while I'm using it. I had to stop Imiquimod because it made my autoimmune diseases flare up as if I had severe flu. I try not to let it get me down too much and obviously I don't want invasive SQC but the thought of continuing to use this cream at regular intervals for life, especially as my lip seems to be getting worse not better, is rather depressing.
My dermatologist is an expert and I know I'm in the best possible hands but she is also very busy and I can't see her face to face presently because I'm shielding and the risk of Covid is too high. She phones often to check up on me and I think she's becoming concerned that my lip so far never stops reacting to the cream. She has thought about using a Vitamin D cream as well to heighten the response but as it's on my lip she's also concerned about how I will cope.
So I'm here looking for others who have Actinic Cheilitis ie only on the lip to see how you have fared with treatments and how it's worked out for you.
Hi ActinicCheilitis58 and a very warm welcome to the online community
I'm sorry to read that you've been dealing with actinic cheilitis for such a long time. It must be very demoralizing for you that despite you and your dermatologist's best efforts it stubbornly refuses to clear up.
I used the search function in the group to see if anyone has mentioned it either in their profile or in a post but drawn a blank I'm afraid.
When you have a minute, it would be great if you could pop something about your journey so far into your profile as it really helps others when looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
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"Never regret a day in your life, good days give you happiness, bad days give you experience"
Thanks very much latchbrook. I did try the search bar but same as you I could find nothing. I was thinking of quitting to be honest because I have so many non cancer related but equally serious cond
ions that I just wanted to find someone else with same condition really. I’ll just leave my post for now in case someone picks it up. I don’t want to describe my journey as it’s been so long and nigmarish and non cancer related that I can’t really see it would help others much. But happy Sunday anyway and thanks so much for replying
That's fine if you don't want to put anything in your profile ActinicCheilitis58.
Wishing you all the best and I hope you manage to get it resolved.
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"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hi ActinicCheilitis58 and how are you today?
Please don't think you sounded standoffish as I didn't think that at all. In fact, when I've just reread my reply to you, I realise that it might have come across as if I was a bit miffed with you not wanting to complete your profile and that wasn't the case either! It just goes to show that when you can't see someone's facial expression or hear the tone of their voice a message can get misinterpreted.
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"Never regret a day in your life, good days give you happiness, bad days give you experience"
I don't know if you've taken a look at my profile but I was diagnosed with malignant melanoma 4 years ago. After having various surgeries I have a check-up every 3 months when my body is checked head to toe to make sure nothing else looks like it might be a problem. However, since last May these check-ups have been by telephone!! So they're relying on me saying if I think there's anything wrong.
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"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hi AnnieA and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
As Pomlady hasn't been active in the community since they posted over a year ago, they may have left and not see your reply to them, so it might be better if you join the group and start your own post if you are wanting to find out how others have got on with Efudix.
To join just click on the banner at the bottom of the page or click 'Join' under 'Group Tools'. Once you've joined you can then start a post by selecting '+New' or '+' depending on the type of device you're using. Clicking here will give you step by step instructions on how to join and post in a group.
It would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
If you have any difficulty navigating the community just drop me a reply and I'll be pleased to help
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"Never regret a day in your life, good days give you happiness, bad days give you experience"
