Carac on lips

My dermatologist prescribed Carac for me yesterday to begin using on my lips. I am going to begin using it on Thursday night. It is the .05% and I am to use it at bedtime every night. I have a follow up appoinment scheduled for two weeks from now. I thought that would be the end of using the cream, but after finding these forums realized that would be the half way point.

I am very scared of what the cream is going to do to my lips. I have read about all of the irritation and discomfort caused on other areas, and the lips seem so much more sensitive. Does anyone have any experience using the Carac on their lips?

To make all of this worse, I am starting a new job in a hospital tomorrow. I work in a small office now, so I wouldn't have to worry about strange looks wondering what is wrong with me... but I am sure that will be different at my new job.

I'm on day eight applying Carac to area above upper lip from the defining edge of lip to nose.  On the bottom lip, I'm applying surrounding area and about 1/2 of lip surface including the corners.  At this point, the area above the lip and the corners are the most sensitive, though it is all unsitely, to say the least.

Are you only doing the lip surface?  If so, from what I'm seeing right now, you will probably experience extreme dryness and possible cracking.  I am using Aquaphor which seems to be most effective on the lip surface.

I am also treating my hands and forearms (day 21).  Unfortunately, I have to say the lip area is much more sensitive.

FYI;  I have had three PDTs on all areas (applying Levulan Kerastick followed, in one hour, with the IPL and Vbeam lasers).  This is a costly procedure that is said to have less down time and optimal cosmetic results.  There was less down time, however in my case, the AKs were virtually unaffected and a biopsy shows that one on my bottom lip is quickly heading for the Squamous stage (so much for vanity!).

As far as your concerns about appearance (believe me, I get it!), if your treatment is confined to a small area, it will be obvious that you are undergoing a skin treatment (particularly with a layer of greasy ointment).  You will be surprised how many people will say they have been thru it or know someone who has.

I will be happy to give you up-dates over the next two to three weeks.  I will also be watching to see if anyone else has treated the lips. 

Good Luck,

Carole

Thank you so much for the response!

I put the Carac on for the first time last night. My dermatologist didn't give me a biopsy because she didn't want to cut into my lip. She said if the area on my lip wasn't cancer, it wouldn't react. After about an hour my lip felt a little odd and this morning I had what looked like dry skin flaking off... I guess it's working.

I am only doing the surface of my entire lower lip. One thing I found conflicting from what I have read here and what my derm told me is the use of anything else on the area during the day. She told me not to put anything on it at all... no vaseline, Aquaphor or anything. I have Aquaphor because prior to beginning the Carac she had me using it on my lip to see if it would clear up any (it was very red and sore). It helped a bit and I was hoping to keep using it. I am nervous to go against what she said, but everyone here seems to use it. Any thoughts?

 When I asked my doc about using Aquaphor, she didn't seem to be terribly adamant in either direction saying that since the application is on over night, a topical ointment the next day "probably" won't interfere with the effectiveness of the Carac.

I decided to try Aquaphor after reading other postings, particularly the ones from Luckycat (Side Effects of Carac or Efudex - 200 postings) about her success using vaseline (first mentioned on page 2, 4th posting scrolling down).  She continues her postings throughout the process including the week or two after when she reports wonderful results. 

Sooo...on day nine I'm looking pretty bad, but keep in mind I'm doing all around my lips, too.  Also, I have had two biopsies showing multiple AK's. BTW, thank your doc for not cutting into your lip as a first option.  As I mentioned, I let it go too long and then took the laser route (vanity).  The biopsy site on my bottom lip may require a graft...yuk!!

Bottom line:  If it was me (oh, actually it is), I would use a soothing ointment, if the alternative is stopping the treatment all together.  Also, I think your doc is right, the site reaction to the Carac will tell you if you need to continue.  If so, it will NOT resolve itself.

 Let me know how you're doing.

Carole

Well, I am on day 13 now and while my lip doesn't look quite as bad as I expected, it doesn't look good. I have noticed that I pretty much have a distint line across the entire lip where the Carac is reacting. I have been drinking with straws only and have avoided anything I have to eat with a spoon. Its hard to tolerate anything touching my lip. Brushing my teeth is the worst! My lip cracked and bled in three places this morning.

I am keeping the Aquaphor on my lips all through the day at this point. I don't know how they ever expected me to make it without putting anything on!

I wonder if they are at their worst now, or is ther emore to come?

How are you doing with your treatment, Carole?

Hi,

I think your are probably at the worst point.  Have you gone back to see your doc?   Just curious, have you had other skin cancer scares?

I am at the end of my treatment (last application yesterday).  It did seem to peak at about two weeks but it hasn't gotten better as of this posting.  I was using Carac all around my mouth as well as on lips.  The skin is so red it almost looks purple.  My lips have cracked and bled, also.  I asked my doc about using an atibiotic ointment because I'm afraid of infection.  She said just to keep it clean...now, doesn't that just sound sooo simple!

As for brushing teeth....OUTCH!!!!

I'll keep you posted on my recovery and hope you will do the same.

Keep smiling (oh, that was just cruel, sorry)  Carole

Hi,

I am so relieved to find someone else who is using efudex for treatment of lips.  I am treating my lower lip for AK and I am on day 9.  My lower lip is swollen and I show 2 different reactions. The part of the lip closer to the inside of the mouth and at the corners is a wide band of what I can only guess is ulcerated flesh with a yellowish tint.  The area of my lower lip which is more exposed to the outside is still just red but not inflamed or ulcerated like the other part.  I assume this could be because the inside part of lower lip is like mucous membrane and hence, more sensitive.  I don't have any cracking, bleeding or peeling at this point, but I've gotta say this is very painful in the inner area.  Did you have any similar kind of reaction?

I am desperate for information and have not been able to find out anything about lip treatment with Efudex (or Carac).

Thanks,

Mary

Squirtle,

I am on day 9 and I am having a very painful, not to mention, horribly unsightly, reaction which I guess can best be described as ulceration.  It is in a distinct wide band across my lower lip that is raised and yellowish , but the area of my lower lip that is more exposed is actually not too bad.  It is swollen but not all that dry.  I have not experienced any cracking or bleeding at this point.  Looks like a couple of spots might get dark red.  But that inner area is killer.

Does this sound like anything that you went through during your treatment?  My Dr prescribed 14 days of treatment 1x nightly.  

Also-how have you healed?

Thanks,

Mary 

On 2/20/2007 Squirtle wrote:

My dermatologist prescribed Carac for me yesterday to begin using on my lips. I am going to begin using it on Thursday night. It is the .05% and I am to use it at bedtime every night. I have a follow up appoinment scheduled for two weeks from now. I thought that would be the end of using the cream, but after finding these forums realized that would be the half way point.

I am very scared of what the cream is going to do to my lips. I have read about all of the irritation and discomfort caused on other areas, and the lips seem so much more sensitive. Does anyone have any experience using the Carac on their lips?

To make all of this worse, I am starting a new job in a hospital tomorrow. I work in a small office now, so I wouldn't have to worry about strange looks wondering what is wrong with me... but I am sure that will be different at my new job.

Yesterday (3/27/07) my dermatologist perscribed a 2 week treatement of Carac for my lips. I am scared to death and wondered how your treatement went. Do you feel like it was worth it?

On 3/28/2007 Tooplohuny wrote:

 

On 2/20/2007 Squirtle wrote:

My dermatologist prescribed Carac for me yesterday to begin using on my lips. I am going to begin using it on Thursday night. It is the .05% and I am to use it at bedtime every night. I have a follow up appoinment scheduled for two weeks from now. I thought that would be the end of using the cream, but after finding these forums realized that would be the half way point.

I am very scared of what the cream is going to do to my lips. I have read about all of the irritation and discomfort caused on other areas, and the lips seem so much more sensitive. Does anyone have any experience using the Carac on their lips?

To make all of this worse, I am starting a new job in a hospital tomorrow. I work in a small office now, so I wouldn't have to worry about strange looks wondering what is wrong with me... but I am sure that will be different at my new job.

Yesterday (3/27/07) my dermatologist perscribed a 2 week treatement of Carac for my lips. I am scared to death and wondered how your treatement went. Do you feel like it was worth it?

I thought I would chime in about efudex treatment for lips.  I haven't yet completed my 2x nightly for 14 days.  In a previous post I was at day 9, I am now on day 11 and since I am ahead of you by at least 10 days I thought you might be interested in how my process is going.

My first week was virtually unnoticeable.  So if you react anything like me you should be ok in public during that time.  Not until about day 6 or so did I notice a tightness and the beginnings of swelling on my lower lip.  I was able to disguise a slight discoloration that was beginning using some lipstick.  The inner part of my lower lip starting showing raised white bumps and then a solid raised band but no pain just tightness.  Corners of lips started getting sore and then some little white bumps showed up. But since this was still the area toward my teeth, I was still able to hide it pretty well.  Day 7, 8 and 9 I had the most swelling and the raised band became yellow and angry.  Luckily this coincided with 2 days off work because this stage just sucked and sent me running to the internet to see if I could find out more from anyone else.  I stayed at home and have not even wanted to go to the grocery store.

Even my upper lip became involved and that is normal tissue not being treated.  I think it's because the lips are like mucous membrane and very sensitive so my advice would be to cover the upper lip with vaseline of some waxy lip balm to keep the carac from irritating the upper lip if it is not being treated. 

During the big swelling days I put ice on my lip as often as I could which helped the discomfort.  I had also eaten alot of citrus and salty foods those days which I think would have best been avoided.  Day 10 and 11 I have worked but, luckily, in a small office where a co-worker is covering the public contact for me.  I consider my lip unsightly but I'm told it's not that noticeable - like very chapped lips- is how someone described it.  I think they're just sugar-coating it for me, bless their hearts.  The swelling has gone down which helps the appearance some.

 I have three more nights of treatment and I can keep you posted if you like.  Or, in a week or so I can let you know how the recovery is going.

I guess my feeling at the moment is that if it really is attacking those pre-cancerous cells then it's worth it.  And I should be grateful that there is an available treatment for this level of sun damage that does not include cutting (especially because it's the lip)  Ahh, vanity...    But much remains to be seen at this point.

I wish you well.

Mary