Side Effects of Carac or Efudex

Hi Irishgirl and Everyone,

Glad that this message thread is still going as the support is so helpful during and even after treatment.  I am feeling great now - over 6 weeks post treatment.  My skin is clear, smooth and looks great.  I still have a few pink areas but they are fading and not a problem.

I realize that I'll be monitoring my skin now on a semi-annual then hopefully annual basis with my dermatologist.  I'm vigilant about sunscreen and glad there are so many choices.

Hang in there to everyone in treatment - it's worth it for your health and the time does indeed pass.

My husband starts carac treatment on his face today....both cheeks, for two weeks.  Then he sees his Dr. and the Dr. will tell him how much longer. We are anticipating a total of about 3 weeks. He loves to garden and we are just starting planting season.  Will he be able to tolerate the sun if he uses a good sun block and a large hat? 

He also goes to the gym every day.  I am worried about infection after the skin starts to erode.  Should he lay off of the gym and perhaps just exercise at home? 

What do men do about shaving?   Sounds like that is NOT even a possibility. 

Any tips, advise, ideas...all will be greatly appreciated.  I think I am more worried about the next few weeks than he is!

Hello everyone.

The Carac treatment has come to an end for me last week; nearly 4 weeks; the derm said to stop (scabs on my lips were pretty bad) and to start the Fluticasone Prop. as a cream to "heal". It's been a week I use it and the scabs and "open wound" are gone but a dark red mark is all around my mouth (lips). I am supposed to use this another week but honestly I am starting to worry if this is going to be there for ever (the marks).

This treatment has changed my life in a way: I have become a sunscreen nut. have not exercised in 6 weeks except walking as I tried running and the sweat did not feel good at all on my face and cannot wait to run again.

Good luck to all, let me know what results are expected on the lips if you know. Thanks

I have just gotten home with a prescription for effudex for my lips (specifically the lower lip) and haven't started it yet.   I asked both the dermatologist and the pharmacist if there was anything I should or shouldn't put on the lip during the treatment and the answer was vague.

 I guess I find myself wondering this because I have been using so much lip balm for the last few years I can't imagine not using it. Then 2 weeks ago the Dr prescribed desonide ointment and told me I could use that on my lips up to 4x/day.  There was a nice improvement to my permanently crackled lips for about a week.. but now they are back to dry and itchy and dying for something to go on them.

 I've seen sites that say you should use a steroid cream with the effudex, but it didn't specify whether that was from day one or later in treatment. Does anyone know?  I've also seen something about using it with renova to speed up the process but that sounds scary and painful to me.

 Anyone have advice for dealing with a lip treatment?  My Dr has prescribed once a day for 2 weeks... (going back in 7 days) ... so I'm wondering if I should plan for the 4 weeks everyone here seems to be talking about?  And if once a day is sufficient?

 Thanks!

Mom O'Four

Mom O'four,

I used Carac for almost 4 weeks on my lips and I can see the difference now...now cracked anymore and soft. After Carac was Ecutivate for 3 weeks (healing process) to get rid off the scabs and redness. Now, I am still with a few "marks" in the corners of the mouth where the scabbing was important, but it will fade away eventually. During Carac (applied in the am) I could not use anything on the lips (dying for moisture) except vaseline in the pm. i now use the lip balm with SFP and wait for it to totally look normal. It has helped a bunch. Good luck!

Hi Mom04,

 I just had a follow-up appointment with my doctor and asked him that question after reading on here that people use cortisone during Efudix treatment.

He was quite firm that using cortisone during Efudix treatment might be detrimental to the work Efudix does.  He said it should only be used after the course of Efudix.

I havn't used it on my lips but he did say that it's OK. Someone on here said they ended up taking fluid meals through a straw. I'd get on with it, the first step is the hardest but once you're doing it you can count down to the end and need to be regular.

I've been keeping a diary of my treatment over the last 2 years and have put it on line along with some thoughts and photos. It's a bit rambling at times though.

http://www.mynewsplace.co.uk/efudix.html

Regards
Pete

Hi Mom04!

I completed my Efudex 5% twice daily for 21 days about 18 months ago.  My entire face and lips were treated.  My lips reacted to the tx. more quickly than my face. . .and seemed to recover faster than the rest of my face.  It was a very uncomfortable experience for me, but manageable.  Granted, I was using twice as much daily as you've been prescribed (18 months ago mine was a very common prescription.  I've asked my doctor why the treatment isn't as aggressive as it was a couple years ago and he responded that the twice a day, 21-28 day regimen will kill more pre-cancer cells, but the risk of infection out weighs any benefits the harsher treament offers.  A milder treatment regimen seems reasonable given this information, and though I didn't get an infection, as brutalized as my face and lips were I agree that infection is a valid concern.  Many who have posted here describe the prescription you've mentioned. . .it's quite common.  And like me, they describe the experience as uncomfortable but manageable).  Here is what I learned:

1) Two hours after applying Efudex, I would liberally use Aquafor throughout the day.  Keep lips moist!  Very important.

2) If you develop scabs: Mornings will be the worst.  Lips may develop yellowish scabs that bleed when torn. . . bleeding takes FOREVER to stop!  Apply Aquafor fisrt thing to "loosen" scab.  Take your time, let "em soak.  Then use a warm washcloth to gently remove scabs.  Gently!  Soak some more, repeat. When I rushed the process I would start to bleed.  Getting ready in the morning was a 30 minute process.

3) My lips swelled.  A lot.  I used ice water in a glass pressed to my lips, or ice pack to to bring swelling down.  I kept a large spoon in the fridge to press on lips.  Whatever you do, don't just take something out of the freezer and place on lips.  If it sticks to your lips. . . .Yikes!  I'd give up the secret rocket formula before I do that again!

4) I did have to take meals through a straw for about 5 days.  I used frozen protein shakes.  There are many brands to choose from. MacDonalds had the best straws! Buy a handful.

5)  Lighten your load.  This treatment takes a very heavy toll on stamina.  I was mentally prepared for the uncomfortable state described by others, but I was ill prepared at how physically challenging this can be for some of us.  Elicit some help.  Let the laundry pile up.  Sleep whenever you can (some nights it was almost impossible!)

6) Your lips are going to become red and swollen, you may develop scabs.  Remember, the Efudex ONLY reacts to pre-cancer and cancer cells.  If you react, it's working.  You are treating a serious malady.  Failure to treat can be disfiguring and/or deadly.  I know.  I lost my right nostrel without even knowing what skin cancer was! (Thank God for reconstructive surgery). I'm young, only 46 at the time AND IT HAPPENED TO ME! 

The good news is my face and lips are cancer free (I've had some SCC removed from my neck and chest this year - areas I have yet to treat).  My face and lips look ten years younger.  I too was a lip balm addict, always keeping something on them to keep them from flaking, itching.  I haven't used lip balm since my treatment! Oh, and my lips are a consistant color thoughout too!  Not that marbled texture that they used to have. 

Good luck, stay positive.  Post Post Post.  I found lots of support, humor, and experience here.  This site really helped me when I didn't think I could take another minute of this truly difficult remedy to a truly serious condition. 

Les C.

Hello Les C,

Thanks for the very detailed and valuable info.  It brought back memories of my treatment, and why I wear a big hat now and lots of sunscreen.  Which brings me to the point of my posting again after such a long time.

 I have been very good about wearing sunscreen, especially on my face.  Usually 55 or higher, but I just recieved a link to this website that has detailed information and rankings on the top best sunscreens.  

   http://www.cosmeticsdatabase.com/special/sunscreens2008/

This report is not what I wanted to see.  I was told by my dermatologist that Neutrogina dry-touch 70 is one of the best, so I've been using that sunscreen for over a year. But this report gives that product and most Neutrogina sunscreens a bad rating, mainly because it contains oxybenzone.

 Question: what sunscreens are your dermatologists recommending and how to they rate on this report?

AceAce

Thanks for the update Aceace, very informative.  My sunscreen too was listed poorly.  Another example of higher price tag does not always equate to better quality. 

Les C.

Dear Noranne

 Can you be more specific about the mineral based makeup and green tinted primer you used?  Brand?  Stores where available?  Shades?  I am an Air Force attorney and the jokes from a couple of years ago about wearing a birqua to work ring true!  I can't afford to go to meetings looking like a leper -- but I have a faceful of spots to treat so any specific info you can provide would be MUCH appreciated.  I start this regime tonight.  Really have appreciated the opportunity to review the postings to have a sense for what lies ahead.  Pat VDB