CancerCompass message board discussion started by MandiB99 on 10/2/2007 http://www.cancercompass.com/message-board/message/all,16718,0.htm Wed, 03 Dec 2008 00:00:00 GMT Wed, 03 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I'm new here. I'm 25. 20 months ago, my lips started peeling badly. Large chunks of skin were coming off almost daily. I train horses and I am in the sun/wind/weather a lot. At first, I thought they were just chapped and treated them that way. There was no success with anything I tried. I had gotten so used to them being that way that I lost track of how long it had been going on until I went back to work (nurse) after taking a long leave of absense. I cannot wear lipstick/lipgloss because of the peeling and it was driving me crazy at work. I realized it had been going on nearly a year a decided to see a Derm. this past January. He told me I was too young for skin cancer and my lips were just dry. He gave me the impression that he thought I was nuts. He did give me an rx for a steroid cream which did nothing for me. He also suggested I use Vaseline constantly (which I had already tried). Again, no luck. In April I saw a different dermatologist. I told him all the different treatments I had tried (chap sticks, lotions, steroids, oral thrush meds, changing soaps, etc) and he finally agreed with me that he suspected Actinic Cheilitis. Because of the weather here in Texas and the fact that I ride horses in the sun, he wants to wait until November or December to treat my lips. In the meantime, he prescribed Retin A Micro and Amlactin (a lotion OTC). He wants to use Efudex for treatment later. After reading about it here and elsewhere and asking a doctor I work for about it, I am TERRIFIED to try it. I cannot take off work during the treatment and I am afraid I will be miserable and look horrible. I stopped using the Amlactin and Retin A after they made the peeling worsen, areas that previously weren't peeling - started peeling and it was burning like crazy when applied. I contacted the derm. office about this and they said it was expected. I asked if these things were to treat the AC or just to use until the Efudex. They said it wasn't a treatment (therefore not going to cure anything) so I stopped using them. No point (in my opinion) to subject myself to any more torture than necessary.Over the last few weeks, the peeling on my lips has worsened even more. It is more painful, the chunks of skin that are peeling off are deeper than before and my lips are frequently raw due to this. I cannot smile because my lips are dry (even though I do use chapstick constantly) and they have deep cracks in addition to the raw areas.Do you think this is still just Actinic Cheilitis or do you think it may have progressed to SCC?  Is a biopsy the only way to tell if it is SCC? If it is SCC, are there treatments available that aren't as severe, but still effective, as the Efudex?I'm very frustrated, scared and hurting. Please help!!! MandiB99 Tue, 02 Oct 2007 00:00:00 GMT I cannot answer whether you have SCC or not, you would have to ask your Derm to do a biopsy. I went through the Efudex treatment in Feb and did my whole face, neck and chest, because of BCC's. It is not pleasant and I retired from the outside world really. I cannot really give you encouragment either as the lips were the worst to deal with. From what you describe with the peeling and bleeding etc this is what the Efudex does also but maybe at a deeper level, every morning there would be hugh scabs on my lips which would fall off to reveal raw patches on the lips. I applied Vaseline all day after waiting 2 hrs after the Efudex treatment, it was the only thing that helped and did not burn. The lips did not get any better until I stopped the treatment then the recovery was amazingly quick really. I now have lips that do not peel and crack as before and the skin is soft. I describe the Efudex treatment as a  deep Dermabrasion that goes on forever, it seems. I applied the Efudex 2x day for 21 days, it is not pleasant but I feel worth it for peace of mind.Good luck! Samra Wed, 03 Oct 2007 00:00:00 GMT I went back to my dermatologist on Thursday. He did agree that it looked worse, but said that he only want to go the biopsy route if this first treatment doesn't work. I told him I was terrified of the Efudex and I wasn't willing to try it. Instead, he prescribed Carac. Also, he only wants me to use it one week of each month for 3-4 months then he will re-evaluate it. Unfortunately, I feel like I am being an experiment as I am not sure he's tried that specific time period treatment before. I'm planning to start it on Monday, but I have also put in a request to a different clinic for a 3rd opinion (the derm. that prescribed this treatment is the 2nd one I've been to - the first one told me I was wrong and my lips were just chapped).  MandiB99 Sat, 06 Oct 2007 00:00:00 GMT I think Carac and Efudex work pretty much the same way. I do know though that I had no reaction to speak of during the first week, only a few red marks on the cheeks it took longer for most of the areas to become affected by the cream. I commend you for getting another opinion and making sure this is right for you. Maybe because your lips are already cracked etc your Derm suspects that your reaction will be faster. I always understood that you had to complete the whole time of 21 days or more of the treatment for the cancer cells to be brought out and killed off????. Samra Sat, 06 Oct 2007 00:00:00 GMT Hi MandiB99.  I just got on this site because I have been diagnosed with actinic cheilitis and I start Efudex 5% cream tomorrow.  Your lips sound like mine....dry, chapped, sore, peeling.  But I have been messing around with this for years and years.  All due to a lot of sun exposure, skiing, golf, biking, etc, over the years.  Now I am 58, and I am at the point where my lips are constantly hurting and it's hard to eat lots of things because they burn my burned lips, which never seem to completely heal...(even with constant sun block on my lips, and even when I am inside for weeks and no sun!)  Get a biopsy if you haven't done that yet.  It is easy and it will rule out lip cancer.  But it was a wake up call for me...something must be done or I WILL get lip cancer, which will be a lot worse than my unsightly lips when I use the Efudex.  So I am prepared, starting tomorrow, to look terrible for about 2 weeks from the effects of the Efudex.  Luckily I am retired, and I can hide-out, but if you have to go to work, just explain to people you are doing a special treatment on your lips.  It sounds like you are going to try something other than Efudex, but if you want to know how this goes for me (in case you end up doing it) then I'll be happy to keep you posted.  I look at it this way - do I want eventually to have my whole lip cut off, if this progresses to lip cancer, or do I want to look like a mess for a couple weeks?  Whatever you do, get it treated and cured NOW....you are only 25, and you do not want to deal with this still when you are 58!  I am still pretty young-looking overall, active and fit, BUT my lips look (and feel) like hell! MollyOR Tue, 23 Oct 2007 00:00:00 GMT I don't know if anyone who responded to this previously will see this or not, but maybe someone will have some advice for me. I tried the Carac. After he first gave me the rx, I was disappointed that he was basically using me as a guinea pig with the different treatment period (one week a month for 3-4 months) and with no requests to follow up with me for four months.On another skin cancer site, I saw where someone mixed Efudex with DMSO (a solvent product, primarily used on animals now, but previous used in humans too) to make the medication penetrate deeper, faster. I did this for 4 days as suggested by this person and my lips improved GREATLY immediately. They were "healthy" for about two weeks. I was even able to wear lip gloss and have lucious appearing lips during that period. Then the symptoms returned. I tried that treatment again, with no results. After that, I just started using the Carac daily for about two weeks (until I ran out). Nothing! They look and feel the same, if not worse. I'm not sure if the worsening is due to the medication actually working or not, but it is terribly uncomfortably, unsitely and annoying. I'm really considering going to a larger city and seeking out a dermatologist who will 1. do a biopsy and 2. consider laser treatment. MandiB99 Sat, 29 Dec 2007 00:00:00 GMT  On 10/23/2007 MollyOR wrote:Hi MandiB99.  I just got on this site because I have been diagnosed with actinic cheilitis and I start Efudex 5% cream tomorrow.  Your lips sound like mine....dry, chapped, sore, peeling.  But I have been messing around with this for years and years.  All due to a lot of sun exposure, skiing, golf, biking, etc, over the years.  Now I am 58, and I am at the point where my lips are constantly hurting and it's hard to eat lots of things because they burn my burned lips, which never seem to completely heal...(even with constant sun block on my lips, and even when I am inside for weeks and no sun!)  Get a biopsy if you haven't done that yet.  It is easy and it will rule out lip cancer.  But it was a wake up call for me...something must be done or I WILL get lip cancer, which will be a lot worse than my unsightly lips when I use the Efudex.  So I am prepared, starting tomorrow, to look terrible for about 2 weeks from the effects of the Efudex.  Luckily I am retired, and I can hide-out, but if you have to go to work, just explain to people you are doing a special treatment on your lips.  It sounds like you are going to try something other than Efudex, but if you want to know how this goes for me (in case you end up doing it) then I'll be happy to keep you posted.  I look at it this way - do I want eventually to have my whole lip cut off, if this progresses to lip cancer, or do I want to look like a mess for a couple weeks?  Whatever you do, get it treated and cured NOW....you are only 25, and you do not want to deal with this still when you are 58!  I am still pretty young-looking overall, active and fit, BUT my lips look (and feel) like hell!Hi Molly,I just went to my dermatologist yesterday, because my lips are so dry, chapped and burn, suddenly I have a couple of small lesions on my lower lip, went to my primary care dr. a few weeks ago and he prescribed something that didn't work, so anyway, I'm scheduled for a biopsy on the 9th of June and am scared it's lip cancer, but had no symptoms until about a month ago, I know the biopsy is to see if it's cancer, just wondered what problem you had.  I would appreciate any input. Thank you so much!Patricia  busy223 Tue, 20 May 2008 00:00:00 GMT Just an update for people who are facing the same problems...As I stated, I did a treatment of Carac and then tried mixing it with DMSO (which initially worked). After awhile, I finally got a prescription for the Efudex and did it twice a day for 2 weeks and when it appeared to be working, we thought I could stop (PCP doctor, not a dermatologist - I haven't found a dermatologist I trust so far). The Efudex seemed to work for a while, but the problem returned and progressed more rapidly. I started mixing it with DMSO, but I came down with a totally different illness and had to stop. When I recovered, I just decided to use the plain Efudex again, but for a longer period.As of today, I've been on the Efudex for over three weeks and the appearance of the treated area is much worse than when I did it for just two weeks. I have blisters on my lips (actual fluid filled blisters) and they extend into the inner mucosa of my lip...which then, the moisture from that area softens the skin of the blisters and they rupture frequently, causing significant peeling, profuse bleeding and a lot of drainage/weeping from the open areas. The pain is becoming more and more intense. I have reached the point where I can only drink through a straw and I have to eat very small bites of food, very carefully.I stopped the treatment yesterday in HOPES that I've gone on long enough. Almost my entire bottom lip is a blister so I don't know what else I can do.During the night, the drainage dries between my lips and anytime I open my mouth, it breaks everything open and the horrible cycle starts again...needless to say, the last few nights have been pretty restless. MandiB99 Sun, 24 Aug 2008 00:00:00 GMT I'm not an expert but.... i was told once you start the treatment you should not quit.  go from start to finish.   i think your lips don't know what's going on.   I used the carac cream for 28 days on my forehead. the first week there was nothing but as the weeks went by it got worse.  the pain, peeling and burning was unbearable at times.  the cream brings the cancer cells to the surface and then it all peels off.  i now have all new skin on my forehead, cancer free and it feels as soft as a baby's behind.  stick with it, it all works out in the end.mary   MARYDAU Tue, 09 Sep 2008 00:00:00 GMT Reading through everyone's messages was so helpful.  I recently went to skin laser and surgery specialists to consider an ablative process for smoothing out my skin.  The doctor said he thought I had pre-cancer cells on my bottom lip and that I should treat it or have my lips sliced off sometime later.  Lovely!  I was pretty shocked as I noticed they were chapped somewhat but not a big problem.  When I got home I went to NIH-Medline and sure enough, something called Actinic Cheilitis definitely described what I had going on.  He prescribed Aldara (imiquimod).  I'm on the 8th day of the treatment.  Nothing happened for the first 5 days.  But now, it's sore and gross looking and peeling and scabby. The doc said nothing would happen, no reaction, unless there were actually pre-cancer cells there.  So I guess his diagnosis was correct.  Aldara is an immune response modifier.  I saw that Efudex (fluorouracil) is also used and is in a class of antimetabolites.  I plan to ask the doctor why he chose the Aldara instead of the Efudex.  But from what I'm reading here, the reaction is the same.  There are some rants that don't sound credible on the internet that are negative on Aldara.  Efudex and Aldara are both used for actinic keratoses (AK) and Superficial basal cell carcinoma.  I found out that actinic cheilitis is AK but on the lower lip.   Meanwhile, I took most of last week off from work expecting the reaction I'm getting now!  I'm definitely not going in the next couple of days and  hope this starts some kind of healing.  Yeah - it's uncomfortable not to mention looks gross.  I'm going to take tylenol and aspirin.  Is that what other people took?       emjaylovin Sun, 14 Sep 2008 00:00:00 GMT