CancerCompass message board discussion started by mjcarib on 10/31/2007 http://www.cancercompass.com/message-board/message/all,17559,0.htm Fri, 29 Aug 2008 00:00:00 GMT Fri, 29 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I have been reading the messages about the usage of Efudex but I have more questions. I have been usning Efudex for 13 days, twice a day. My face, nose and chin are very red, getting crusty, and very painful.  But my forehead, has many spots, very red but not to a crusty stage, just very red spots.  I went to my Doctor yesterday and he said for me to stop using the efudex and it had done its job.  I asked about my forehead and he said to stop and that I had lasted longer then most of his patients.  I am not sure I trust his knowledge.  I am actually thinking I will keep putting the Efudex on my forehead only as I believe the rest of my face is fried!  I am also so amazed like so many of you that the doctors don't want to see us like everyweek to check our progress. This treatment seems so important to me and just not so important to them. I wish I could see more pictures of faces during treatment.  I should get my husband to take pictures of mine today and until the end. I should have from the start.  Any pictures out there? When do you stop? When it is very red or red and blistery like? Thanks to all. MJ  mjcarib Wed, 31 Oct 2007 00:00:00 GMT Hi MJ,  I am on Day 9 of Efudex, twice daily. Just on bottom lip.  And it is terrible.  I wish I could find pictures too.  I took pictures of my lips today, and it is SO terrible but I feel I need some sort of record of this, to show people what to expect.  I'm not supposed to go back to the Dr. until next Tuesday (at 2-week mark) but I am considering stopping now.  My lip has swollen to about 3 times the size, and it is full of crusty scabby oozing ugly things that sometime bleed.  I am having great diffitulty eating, drinking, talking, and sleeping (I am writing this at 2 a.m.)  I see you are several days ahead of me.  I know you are doing face, and not lips, but I would appreciate hearing of your experience.  Are these crusty things supposed to fall off?  Surely the Efudex has done its job on me, so is it necessary to keep going?  Can I over-do this stuff?Thanks for any info,Molly MollyOR Fri, 02 Nov 2007 00:00:00 GMT  On 10/31/2007 mjcarib wrote:I have been reading the messages about the usage of Efudex but I have more questions. I have been usning Efudex for 13 days, twice a day. My face, nose and chin are very red, getting crusty, and very painful.  But my forehead, has many spots, very red but not to a crusty stage, just very red spots.  I went to my Doctor yesterday and he said for me to stop using the efudex and it had done its job.  I asked about my forehead and he said to stop and that I had lasted longer then most of his patients.  I am not sure I trust his knowledge.  I am actually thinking I will keep putting the Efudex on my forehead only as I believe the rest of my face is fried!  I am also so amazed like so many of you that the doctors don't want to see us like everyweek to check our progress. This treatment seems so important to me and just not so important to them. I wish I could see more pictures of faces during treatment.  I should get my husband to take pictures of mine today and until the end. I should have from the start.  Any pictures out there? When do you stop? When it is very red or red and blistery like? Thanks to all. MJ Hi MJ,Have you completed your treatment? What duration was it for? Twice a day applications?If you are done with the applications of Efudex how is your face now.i have been done now for one week after a two week twice a day application to my whole face. I would have hoped I would be back to normal after one week but it's not even close and I am a little worried.i hope you can provide something encouraging.   carpetbagger Thu, 20 Dec 2007 00:00:00 GMT Lots of people write in about using Efudex.  Here is my experience.I have done it 3 times in the last 5 years or so.  My regime is a bit different from others reported.Apply to face and ears (avoid eyes!) at night and wash off in the mornig.  Duration, Doc says do it for 2-3 weeks (as long as I can stand it which is about 2.5 weeks). Affected areas light up, get ugly and eventually peel.A few things I have learned:1.  Lighting up continues for some time after you stop and will bring out areas in thicker skin over the next few days.  A little depressing, but reason to stop before it gets too bad.2.  The reason to use it is that it is selective.  I believe that when you use it too long, it just kill everything and you lose the selective nature.  Hence my choice is to use it less aggressively, but do it every few years.  This is based on the theory that the drug is more rapidly absorbed by cells that are dividing rapidly.  The reports I have seen on using it twice a day for a month seems excessive -- may as well do one of the full chemical peels which is over much quicker.3.  Healing seems to be quicker if you use a topical antibiotic such as neosprin or generic equivalent.  Also, the vasline base (I guess) is soothing.  Even better to use the kind with pain killer!4.  I seem to do better if I get some exercise.  Maybe increased blood flow or you just get your mind off of it?5.  About the only pleasure you have is in scratching and peeling off the dead skin.  Enjoy!  But as my Doc said, it is probably better than burning them off one at a time.Just my opinion and experiences.   akguy Wed, 26 Dec 2007 00:00:00 GMT I am at the end of of 2 weeks of Efudex.  I agree with the other posters...it is not much fun. It feels like a bad sunburn and then starts flaking and peeling all over the place. My face (I had to do the whole thing) is mostly covered in red in the "T-zone" and now new red spots are appearing on my cheeks.  Some tips for those of you just stating:1. Ask a LOT of questions before starting. I did not know that i could use Neosporin or vaseline on my face.  After about a week I called my dr and said i didnt think I could do it any longer. that's when I found out i could put something on it to soothe it a little.2. A cool washcloth pressed gently on red areas feels wonderful.3. Take a pain reliever (although i think the info said no aspirin.)  4. Avoid alchohol.  I had some wine on Christmas, thinking it would deaden the pain a little. But the opposite happened. My skin really flared up and it was painful.5. Surprisingly, as another poster said, exercise does help (although i wouldnt want to sweat!!)  Yoga helps to relax you.  Being uncomfortable all day really starts to take its toll. Be good to yourself. fiona d Sun, 30 Dec 2007 00:00:00 GMT Hi, Anyone out there on Efudex or  Flourouracil, 5-FU like I am, and want to talk about it?  I am using 5-FU Flourouracil cream on my face instead of Efudex because I have a very high deductible insurance policy and I pay for all my own meds up to $5000 out of my pocket. So the Dr. said that if the pharmacy makes the 5-FU it would only be $50 vs $200.  So I had them make it up for me. Not all pharmacies will do that.  I was impressed that they could do that and that the Dr. listened to my budget needs.   I am assuming the5-FU is equivalent to Efudex.I am on day 13 of 2x applications per day. One more day to go.  I take it one day at a time, and one treatment at a time. On day 7, I didn't think I could make it to day 14, but once I got to 20 applications, and I knew I only had 8 more applications to go and I could brute force finish. The real constant pain didn't set in until about day 11 for me.  There was light pain, like a small sunburn from day 5 to 10, then in intensified.  Now it is like a bad sunburn. Just this morning my skin started to tingle a bit, and I had one small spot peel off, otherwise, no skin is peeling yet for me.  My forehead was unaffected except for some small spots, until about 2 days ago, now even my forehead is getting pretty ugly, and I can feel the spots with my fingertips.  I have taken pictures of myself almost everyday which I could share somehow if anyone wants.  I didn't think my face could get any more red, but it did. My cheeks and nose are more than red, they are deep red, maybe purple. The skin has really tightened up in the last 2 days to, and feels thick and stings on my cheeks.  It hurts when I eat, yawn, or laugh, but keep laughing, it takes your mind off. My son had lunch with me today and he told me to quit groaning while I ate. Now that is funny.  We went to the mall, and there were tons of people. Only one little kid starred at me, everyone else is too busy to notice.  And I keep telling myself, just be glad this isn't permanent.  I was dropped at the front door so I didn't get out in the sun. I told the dermatologist that I wasn't going to shave anymore, and she said that is fine.  But I did shave yesterday, but only pulled the blade down (with the grain) and didn't get too close. So that didn't really hurt any more or less, but I felt better. Showers seem to make my skin feel tighter and the pain intensifies. Actually, after I apply the 5-FU it feels pretty good, it calms the skin down.  I normally don't take Ibuprofen but I have taken some 4 nights out of 13.  Super cold tap water running across my face feels amazingly good, because it seems to dissipate the heat radiating from my cheeks.   it only helps for about a minute. Then I pat my face dry, no rubbing. Ouch.  I called my doctor about day 9 and asked if I could put something on my face, they said a moisturizer is OK, so I did that, but beware, it really really really stings. So if your doctor approves, I would do one side first, I couldn't handle the pain of both sides at once, but one side I could. My face got so red that I wasn't going to go out, but I found that just sitting in the house, all I did was think about my face and the pain. So I decided what the heck, and ran some errands.  When I talk with someone, I just say I'm taking some treatments from my dermatologist for sun damaged skin.  So far everyone is very accepting.  I have gone to the grocery store, and to mall, and gas station, and I even bought a car this week, and had to go to the dealer about 4 times.  All these things were good because I got my mind off of my face. I recommend you try and run at least one errand, it will reduce the pain, and if you are worried about the sun, you can go out after dark. The only other side effect is that I am having a bit of trouble getting to sleep.  I have stayed up late many times falling asleep on the couch, and then wake up early.   If anyone is ahead of me by a week or two, please let me know what I have in store the next 2 to 4 weeks after the treatment stops.  I am heading to CA, driving with my son. It is supposed to be a fun relaxing trip? Is it going to be?    aceace Sat, 01 Mar 2008 00:00:00 GMT