CancerCompass message board discussion started by Karrie on 2/15/2008 http://www.cancercompass.com/message-board/message/all,20967,0.htm Thu, 20 Nov 2008 00:00:00 GMT Thu, 20 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I have been to the doctor once for a white spot on my upper lip.  She used liquid nitrogen on it which did nothing to it.  I have an appointment with a different dermatologist who sees only skin cancer patients. I have been doing alot of research on the matter, and of course I am not a doctor.  At a minimum, I believe I have actinic chelities on my upper lip.  It is like chapped lips that keep on chapping.  That is in addition to that white spot which chaps right over it also.  The area is in the middle of my top lip, about 3/4 inch long.  I know they say sailors and farmers get this often on their bottom lip.  But I have been a sun worshiper alot of my life, on my back in tanning beds, as well as outside.So I will have to wait to be seen for confirmation.  But in reading alot of posts here, I am confused as to what is the best treatment.  (Assuming there is no squamous or basal cell involvment.)Is phototherapy or Efudex or another of those creams a better treatment choice.  And in the case of it being on the lip, are both the bottom and top lips treated?PPlease, any help is greatly appreciated.  I am a nervous wreck about this.  I have had tons of other skin problems all my life and have been so self conscious about my face as it is.Thanks, and good luck to all going through this.Karrie                                                   Karrie Fri, 15 Feb 2008 00:00:00 GMT Hi Karrie, sorry you are so upset about facing treatment.  but you started your post saying you were about to see a specialist in skin cancer, so you should have "expert" advise and hopefully a good diagnosis and proposals for treatment.  My doc is a researcher and does suggest the "blue light" treatments for many, so do ask about that option. Good luck and keep us posted with your progress.Whitey whitey1 Sun, 17 Feb 2008 00:00:00 GMT Thanks for your reply.  I saw a dermatologist yesterday.  She said I have a keratosis on my lip, plus chelitis around vermillion.  She recommends 3-4 liquid nitrogen treatments.  How does this sound?   I still have an appt with skin cancer specialist next week.  The doctor I saw seem positive that this it what it was, and no biopsy needed.  I am a little paranoid.  My daughter had cancer, (a different kind) and it was missed disagnosed for close to two years.  Thoughts? Karrie Wed, 20 Feb 2008 00:00:00 GMT Karrie, hi, I am just reading your message.  What did the skin specialist say?  Best of luck with everything.  I am in the middle of tx for actinic cheilitis (actinic keratosis of the lip) on my lower lip.  My primary lesion was clear, roundish, would scale up-  off and on for several years.  The dermatologist wanted to freeze it (liquid nitrogen) in December, but it was a Friday and my husband and I had several holiday parties to attend that weekend, so I put it off.  She said it needed to be done fairly soon because this type of thing would turn into aggressive squamous cell (for some reason scc is more aggressive on the lip than other places).  This was a small lesion about 1/6 the size of a pinky fingernail.  No one, including the derm would ever notice it unless you were to point it out. (Toward the end of my Dec. appt., after my examination, I said btw, is this anything, and she had the big reaction.)  Anyway, I left the appointment and immediately did research on it.  So in January, I tried the photodynamic therapy w/ ALA cream and blue light (all one procedure).  This did NOTHING, so I opted out of doing that 2 more times.  In February I started a different tx, the carac treatment, and I would highly recommend this (but I am no doctor).  I am on Day 14 of carac cream, and man, it is doing it's thing!  It will supposedly keep working until the job is done.  There are places all over my lip that are lighting up (blistering, peeling, it is quite yucky),  But all said, I am happy to be doing this tx.  Let me know how you are getting along.  Thanks, and take care. carrieann Wed, 05 Mar 2008 00:00:00 GMT Thanks for the message.  I wrote above and no one had answered, so glad to hear from you.The doctor said it was actinic chelitis, and I should use Efudex for a week to 10 days.  So I start on Monday, and will see him after a week on it.I am not looking forward to it, but as my dad always use to say, it beats the alternative.I am still wondering about eating, and drinking, how that is going to work.When exactly will you be done with treatment.  I was going to have those levulan treatments.  Also had Liquid Nitrogen once and that did nothing. The doctor that did the liquid nitrogen said maybe up to 4 times it would need to be done.  From What I have read, alot don't have good luck with that so why go through it. Hope you write back to let me know how it is going. I will do the same.Are you using Aquaphor or any other topical medicine for cracking, comfort etc?Karrie Karrie Wed, 05 Mar 2008 00:00:00 GMT Hi, Karrie.  Yes, I use plenty of Aquaphor!  Be sure to buy a small size tube to keep in your purse.  This is the only ointment I am using.  I am on carac once a day at bedtime.  I put the Aq on first thing in the morning and all day as needed.I go back to the doctor on March 17.  That will be Day 26.  I did not show any reaction to carac after using it for one week.  Day 8 and 9 started getting red, a little light peeling just under the lip (where I also applied carac).  Day 10, more noticable and more tightness.  Days 11, 12, and 13 were the worst for me.  Angry red; ulceration; bigtime swelling.  Day 14 and 15 (today) are actually a little better.  Still lots of 'erosion' going on.  No smiling allowed~I haven't had any trouble eating.  Just cut everything small and bypass the lips.  I bought some drinkable yogurt.  Get plenty of straws to use when your lip is stinging (drink from the corners of your mouth).  I don't always need to use the straws though.  I was laughing at myself drinking wine and coffee w/ a straw, but hey....ya gotta do what ya gotta do.The doctors don't tell you much, that's for sure.  My doctor just said to keep on using the carac until I come back in.  I haven't needed any pain meds at all.   I do take claritin for allergies, and this may reduce my swelling some.  There is stinging, like right now, but you just try to ignore it.Is the doctor that is treating you the skin cancer specialist?  Thanks for keeping up the dialogue!Carrieann carrieann Thu, 06 Mar 2008 00:00:00 GMT Hi Carrieann,I am so glad you have responded to my questions, and to let me know about your experience.  I hope things are settling down for you. When do you see the doctor again.It took a few dermatologists to diagnose this condition.  Several wanted to do biopsies.  Thank goodness, I found the derm who is a skin cancer specialist.The creams must work differently in terms of time and in terms of how prescribed.  I start Efudex on Monday, twice a day for seven days.  Then I see him the following Monday, and I guess he will decide if I should continue it or not.  I have my Aquaphor, and he gave me a packet of Polysporin. He said to put the cream on both my upper and lower lips.  It is more on the upper, but I guess he thought I had a slight case on the bottom lip.I figure I will be a mess, at least can hide out.  I just wonder how painful it will be.  Just so it doesn't interfere with my sleep.  I have trouble sleeping the way it is.  I worked as a nurse for many years, and all those crazy changing of shifts permanently goofed up my sleep.I figure I should have a few days once I start before the fun begins. I will keep looking for a post from you to see how you are doing.  I hope the healing is going okay for you.Take care,Karrie  Karrie Sat, 08 Mar 2008 00:00:00 GMT Hi, Karrie.   Good Morning!  I have also been posting on a page that I think you will find helpful.  There are 300+ messages to scroll through, just a wealth of information from folks going through the same procedure.  To get to the message board, just type in "All Side Effects of Carac or Efudex" in the Search box at the top of this page.  Let me know that you are able to find it.  Mine should be the most recent entry.~ Carrieann  carrieann Sun, 09 Mar 2008 00:00:00 GMT