CancerCompass message board discussion started by ButterflySwimmer on 12/3/2007 http://www.cancercompass.com/message-board/message/all,18600,0.htm Tue, 07 Oct 2008 00:00:00 GMT Tue, 07 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Who Wants to Do Efudex Therapy Together on the Message Boards?  I'll be beginning tonight.  I'd like a Efudex Buddy to go through this together for support.  Those of you that have already been through this are more than welcome to join in with your experience. ButterflySwimmer Mon, 03 Dec 2007 00:00:00 GMT Butterflyswimmer - I hope your treatment is going well so far.   I will be starting my own Efudex 'experience' in about 3 weeks or so and I think it would be easier to go through it with someone so hopefully there will be someone that is in the process of doing it right now as well.   I would be happy to lend any support that I can as I  have researched the treatment on line extensively and definitely can see that it is not going to be an easy process.  Are you doing your face or some other area?   I would love to hear how you are doing along your Efudex journey.   Hope you are doing ok.    I Potterylady Wed, 05 Dec 2007 00:00:00 GMT  On 12/5/2007 Potterylady wrote:Butterflyswimmer - I hope your treatment is going well so far.   I will be starting my own Efudex 'experience' in about 3 weeks or so and I think it would be easier to go through it with someone so hopefully there will be someone that is in the process of doing it right now as well.   I would be happy to lend any support that I can as I  have researched the treatment on line extensively and definitely can see that it is not going to be an easy process.  Are you doing your face or some other area?   I would love to hear how you are doing along your Efudex journey.   Hope you are doing ok.    IHi,Potterylady.  I began using Efudex on my face only, on Tuesday morning, so I've gone through 4 1/2 days.  So far, the only thing I've noticed is the pre-cancerous area on my forehead seems to be healing.  On day three I noticed spider veins appearing on my cheeks, nose and around the corners of my mouth.  I called the PA that prescribed the Efudex and she said if you have Rosacea especially (I do) that will happen.  She said it should get better a couple of months after stopping treatment.  Also, I found this interesting....I told her on message boards I learned that people are putting it on their open sores as they go through treatment.  She said, if I get open sores (open, cracking or bleeding) to STOP treatment, if it is at the 2 week point or after.  She said treatment is normally 2-4 weeks, so stopping at that point would be fine.  She has me on it for 3 weeks.  I thought by now I'd see redness or swelling, etc.  Day 5 is tomorrow so I'm sure I won't be disappointed, oh dear!   I hope others join us for support on this journey and that we can be of help to others to follow.  Thanks for writing.   ButterflySwimmer Sat, 08 Dec 2007 00:00:00 GMT  Hi Butterflyswimmer - was just checking in and hope that your treatment is going well (or at least that you are not too miserable).   I wanted to ask you (and others can chime in if they know) if your dermatologist said that you could use moisturizer or aloe while you were doing your efudex treatment.   I thought mine had said that they really did not want me to use anything other than the efudex for the 3 week time period and then after that was done, I could use moisturizer.   My skin is dry normally this time of year so I can't imagine how it will be if I don't put any moisturizer on....I am still trying to decide when to start my own treatment - there is no good time but I think I will start around Christmas.   I am definitely getting nervous.Hope everything is going ok and let me know how you are doing. Potterylady Tue, 11 Dec 2007 00:00:00 GMT Hi Butterfly Swimmer-I'd love to be your Efudex bud as I'm starting my Efudex treatment today and will continue for 4-6 weeks.  The messages on this site were very helpful to me this last week as I was waiting for my biopsy results.  I'm feeling really uncertain about all of this and althought I've got a great family and friends to help me through this, I will be secluding myself as much as possible and having someone else to correspond with who is going through the same thing would be great! Chicken Chick Thu, 20 Dec 2007 00:00:00 GMT  On 12/3/2007 ButterflySwimmer wrote:Who Wants to Do Efudex Therapy Together on the Message Boards?  I'll be beginning tonight.  I'd like a Efudex Buddy to go through this together for support.  Those of you that have already been through this are more than welcome to join in with your experience.Hi,I started my treatment on November 29th twice a day for two weeks ending one week ago on December 14th. I treated my entire face. It has been one week since I stopped and I have not peeled and am still very red and spotty. I feel like if I could go back in time I would not do this. Maybe in a week or two I might feel different (I sure hope so).How is your treatment progressing. How long are you using efudex? Twice a day? What areas are you using it on? I hope all is going well for you.   carpetbagger Thu, 20 Dec 2007 00:00:00 GMT Hi Chicken Chick.Today is my 17th day of twice a day Efudex.  (First, I'll say that anyone not sure if they should start before Dec. 25th or not, the soonest that anyone I've read about has seen red spots starting up is day 3.  If it was me, I'd start the 23rd, unless you plan on going out for New Year's Eve.  Be sure and make your doctor, shopping, etc. appointments to be no later than the first week. I didn't see anything noticeable to others until day 7 w/ 5 spots. Day 8: 2 more spots + above upper lip & lost appetite, tired by noon.Day 11: most of upper lip red, lost appetite  for short time in afternoon.Day 12: 2 more spots on ose, other areas sameDay 13: about 26 (10 major) on forehead, nose worse & swollenDay 14: some crussing starting on 7 spots & upper lipDay 15: NOW RAW & stinging during washing, 6 new spots, 5 spots starting to crust on forehead & 3 on upper lip crustingDay 17: Almost all spots/areas burning during washing, more redness, some tiny ant-feelings on some spots....that is healing happening.  First sign of getting better is area directly above and across upper lip is now less sensitive and a little tan w/ minor crusting.   More tiny spots in new areas, mostly on outside of cheeks.I have been taking low-molecular weight hyleraronic acid (Injuv) and  taking extra Omega- 3's for about two weeks before starting so skin will have more moisture from the inside out.  I'm using a natural, gentle face wash.  I use a glove to wash my face and a soft sponge to dap my face clean.  I like it when I wash in the shower, it's not as harsh as the patting to rinse my face.  I let my face air-dry for one hour before I put my cream on.  I imagine 15 min. might be fine, I just want to make sure my pores are closed when I apply the Efudex.   Then, I put a drop or two of Emu Oil on a  Q-tip and dap it in the creases of my nose and corners of mouth so as not to get the Efudex in there.  Just put a touch on or it will spread with the face heat. My PA who prescribed the Efudex said NOT to use an antibiotic cream such as Neosporin.  If the itching continues to increase I'm going to try Emu Oil on one side of my face and my refridgerated pure Aloe Gel on the other side to see which helps more.My last application (of 21 days/ 2x's/day) will be Monday night.  Tomorrow I'm going to call my PA to see if I should continue a little longer on the newer spots just showing up.  If they aren't working tomorrow I'll just continue putting it on the new areas until I can reach them next Wed. or Thurs.  My follow up appt. isn't until Jan.7. I hope this helps, I know the board first scared me but, also, and more importantly, gave me the courage to do this.  I knew what to expect and that I wasn't the only one going through it.  P.S.  My poor friends are coming to visit Tuesday and have no idea I'm doing this treatment.  Surprise!!!!    ButterflySwimmer Thu, 20 Dec 2007 00:00:00 GMT  On 12/20/2007 carpetbagger wrote: On 12/3/2007 ButterflySwimmer wrote:Who Wants to Do Efudex Therapy Together on the Message Boards?  I'll be beginning tonight.  I'd like a Efudex Buddy to go through this together for support.  Those of you that have already been through this are more than welcome to join in with your experience.Hi,I started my treatment on November 29th twice a day for two weeks ending one week ago on December 14th. I treated my entire face. It has been one week since I stopped and I have not peeled and am still very red and spotty. I feel like if I could go back in time I would not do this. Maybe in a week or two I might feel different (I sure hope so).How is your treatment progressing. How long are you using efudex? Twice a day? What areas are you using it on? I hope all is going well for you.  Hi, Carpetbagger,Did you call your doc to tell them how you did, or did not do (no peeling)?  When is your follow-up?  I was just wondering if you needed to stay on the cream a little longer.  Most of your questions are answered on my response to Chicken Chick.  By the way, my PA did say if my faced cracked open or bled at two weeks then I could stop at that time instead of at three weeks. Let us hear what your doc says.   ButterflySwimmer Thu, 20 Dec 2007 00:00:00 GMT Thanks for replying so quickly!  Wow, you're nearly done; sounds like your symptoms are classic.  I was a bit surprised to read about your fatigue and appetite loss.  Not many people report those symptoms.  I'm fully prepared for it as I"ve experienced a lot of that when I've used Aldara on my basal cell lesions. My MD said not to use anything except water on my face until I'm done with the Rx.  So many people use aloe, Aquaphor, and cortisone creams but he said in his opinion they just interfere with the Rx and I only want to do this once!  I'll really look into good stuff to use once the scabs and dead skin fall off and my beautiful, new skin emerges ( ; We're Jewish, so my holiday is over and I don't need to worry about Christmas (we're the movie and Chinese food family on Christmas).  New Year's could be a bit of a problem.  We're invited to a big party, but we'll probably stay home with champagne and Dick Clark's New Year's Rockin' Eve.  Sniff: 2 years ago we were in Manhattan on the 31st and it was awesome.  I've been preparing my family, friends and neighbors for this, but judging from the few photos online, it's hard to imagine their responses when they see me mid-treatment.  Let me know how your friends react! Thanks again and keep me posted on your recovery and I'll let you know how I do starting next week.  Have as comfortable a Christmas as you can. Chicken Chick Thu, 20 Dec 2007 00:00:00 GMT  On 12/20/2007 Chicken Chick wrote:Thanks for replying so quickly!  Wow, you're nearly done; sounds like your symptoms are classic.  I was a bit surprised to read about your fatigue and appetite loss.  Not many people report those symptoms.  I'm fully prepared for it as I"ve experienced a lot of that when I've used Aldara on my basal cell lesions. My MD said not to use anything except water on my face until I'm done with the Rx.  So many people use aloe, Aquaphor, and cortisone creams but he said in his opinion they just interfere with the Rx and I only want to do this once!  I'll really look into good stuff to use once the scabs and dead skin fall off and my beautiful, new skin emerges ( ; We're Jewish, so my holiday is over and I don't need to worry about Christmas (we're the movie and Chinese food family on Christmas).  New Year's could be a bit of a problem.  We're invited to a big party, but we'll probably stay home with champagne and Dick Clark's New Year's Rockin' Eve.  Sniff: 2 years ago we were in Manhattan on the 31st and it was awesome.  I've been preparing my family, friends and neighbors for this, but judging from the few photos online, it's hard to imagine their responses when they see me mid-treatment.  Let me know how your friends react! Thanks again and keep me posted on your recovery and I'll let you know how I do starting next week.  Have as comfortable a Christmas as you can.Butterflyswimmer and Chicken Chick,Butterflyswimmer - glad to hear that your treatment is almost over with (at least the Efudex part) and you probably will now just be going through the healing process, but at least you can start putting moisturizer on your face.  I was interested to hear about the Emu oil that you are using - is that something that your doctor told you about or did you hear it somewhere else?   Are you putting it in the creases of your nose so that the Efudex does not go there?   I was just looking it up on the internet and it was describing the different uses for it and the healing qualities, etc, but I have never heard of it before.   Thank you for outlining your time line of when things started showing up, that is helpful.   I have struggled with when to start this process because of the holidays, but think I will begin sometime around the 23rd or 24th of December.   Keep us posted on how your healing process is going and what you did to be more comfortable.Chicken Chick - I would be happy to be your Efudex buddy as well since we are starting around the same time, although you might be a few days ahead of me.   Are you doing your entire face?   You said you did this before with Aldera cream?   Isn't that similar to Efudex?  How long ago and was that on a different part of your body?My doctor also said that I should not use anything else but a very mild face cleanser during the time that I am using the Efudex and should only use Aquaphor, etc. after I am finished (twice a day for 3 weeks).  There does seem to be a lot of differences of opinion when it comes to putting stuff on the skin during the Efudex treatment - it would be nice to know what the best thing to do is....A friend of mine said that she met someone else that had done Photodynamic Therapy with Blu light instead of the Efudex treatment and said it was a much shorter 'down time' and less irritation to the skin.  Did either of you (or anyone else) research this path?   I may have to ask this in a separate message. Anyway, hope everyone has a nice holiday season and will look forward to corresponding with you to see how things are going. Potterylady Fri, 21 Dec 2007 00:00:00 GMT Cool, another buddy!  Yes, started last night (I cried knowing this is the best I'll feel for several weeks).  This morning started to feel some slight pin-pricky (but not painful) tingling sensations on my face.  Yes, I'm using this all over my entire face so as to treat my large AK on my forehead, several smaller lesions which are also probably AKs as well as anything below the surface which can't be seen yet (and my MD and I feel there are probably many given my history). A little background: about 10 years ago I noticed 3 pink, flaky areas, 2 on my left arm and 1 on my left thigh, that never seemed to go away.  They didn't hurt, but just churned skin flakes evey few months.  I went to a dermatologist who diagnosed me with psoriasis.  This didn't surprise me as my mom had it, but even with the steroid creams she gave me, they never went away.  18 mos ago we were in Hawaii and the spot on my thigh suddenly got a lot bigger and began to bleed.  That's when a new dermatologist immediately gave me a new diagnosis of superficial basal cell carcinoma (you'll see this in websites as sBCC).  He prescribed Aldara, which is an immuno-response modifier and makes your own body produce interferon to eliminate the cancer cells.  It's a spot treatment and the lesions swell, get ugly, itchy, oozy for several weeks (most people are told to use it for 4-12 weeks) until finally you form a big scab, it falls off and hopefully no more cancer.  It's not horrible, just very unpleasant.  All those initial 3 lesions were eliminated with the Aldara.  I've since been seeing my MD every 3 months 'cause more spots keep appearing but just on my face.  These next several were small AKs and I had them burned off with liquid nitrogen which also worked fine.  I started Aldara again in October for a big sandpapery lesion (1" across) on my forehead.  Got a huge scab, got infected(sometimes happens with Aldara), scab falls off, but sandpapaey skin is still there.  I had a punch biopsy last Friday and my MD ands I were worried it was squamous cell carcinoma (SCC) which would have required Mohs Micrographic surgery.  Well, "luckily" it's just an AK which most MDs will agree will become SCCs if not treated. Potterylady and Butterfly Swimmer, thanks for your continued posts.  If you're interested in sharing photos (I'm going to take one daily and have my "before" shot already) we can exchange privately.  I'm really happy to have you two to share with! Chicken Chick Fri, 21 Dec 2007 00:00:00 GMT Day 19: more itching (tolerable-I touch the spots where the itching is & it helps for a short time), today MUCH pain & rawness upon washing this afternoon!!! This morning was painful too but, not untolerable like now! I'm thinking about stopping 2 1/2 days early, except on the spots that have not begun to crust yet & on my original two spots on my forehead for which the Efudex was prescribed. My PA said using Vaseline two hours after the cream was okay. I refuse to put a petroleum product on my open, sensitive face. This treatment is harsh enough. I wonder ( no docs to ask on the weekend or Mon or Tues) if stopping once crusting starts wil be alright, seeing as it keeps working for a while even after treatment stops. If anyone knows, please pass it on. Thanks. ButterflySwimmer Sat, 22 Dec 2007 00:00:00 GMT Oops, I forgot... Yes, I'm putting the Emu oil on a Q-tip and putting in the creases on the sides of my nose and corners of mouth, also, around my nostrils to keep the Efudex off. My PA told me to make sure not to get any around there and so this is my way of 'making sure.' ButterflySwimmer Sat, 22 Dec 2007 00:00:00 GMT I am so sorry for your misery!  Yes, this is a horrible weekend not to have a Dr. around for advice.  I know this is easy for me to say on day 3 with extremely minimal symptoms, but try to tough it out until Tuesday!  Everything I read beforehand indicated that you get the best results by staying with the Efudex for the full amount of time.  Just wait, I'll be screaming in 2 1/2 weeks... Butterfly Swimmer, I'm sending good thoughts your way tonight to help you get through this.  I've been so depressed these last 3 days knowing what's ahead for me.  Just keep thinking about how great your face will look in a couple of weeks when the new skin comes in.  My MD said that this is better than a chemical peel and could take 5-7 years off your looks. I don't know your age (I'm a 45 yr. old female; read: vain), but this info will hopefully get me through my full 30 days. Hang in there, and have a nice Christmas with your friends! Chicken Chick Sat, 22 Dec 2007 00:00:00 GMT Butterflyswimmer - I am sorry for your misery as well, it is a hard time of year to be feeling so lousy, but is there ever a good time to do such a treatment?   I was figuring January was a good month to hibernate, so my plan is to start Christmas Eve.   I am very curious how many spots are going to show up on my face after I put on the cream since there is only one very light spot right now.   Were you suprised how many spots showed up?   I have seen some pictures of people on the internet where their whole face became red and crusty during the treatment.  Did you find that happened to you or did it get red only in the areas where you had the AK's?Chicken Chick - glad to hear that your symptoms are not too bad yet.   I keep worrying that I will have a bright red face on day 1, but it sounds like that should not happen.   I am also going to take pictures along this journey to see how things progress and in the end, hopefully get better.   I also heard that your skin looks better than ever after the treatment so I hope that is true (if it could only erase wrinkles, I would be very happy).I hope you both have a nice holiday, and Butterflyswimmer, I would try and hang in there for your entire treatment if you can, just so you don't question down the line if it was long enough - you don't want to have to do it again!  I may feel the same way when I get to that point as it does sound pretty miserable.  Just take it one hour at a time....2 days and counting to when I start this Efudex journey..... Potterylady Sat, 22 Dec 2007 00:00:00 GMT Good morning, girls.Today is Day 22.  I stopped 2 1/2 days early.  But, I had asked my PA during week one, if my face started to burn so badly or crack or bleed, if I should go on, and she said "No, you can stop treatment at that point, as long as you have been  using the cream for two weeks."  Considering I was using the  highest dosage (5%) twice a day, and the manufacturer says 2-4 weeks, I felt confident stopping.  Also, I could NOT bring myself to put it on another time since, all of a sudden, it became painful.    Now, looking back, I should have stopped a couple of days earlier! My nose didn't get fire red all over until the day I stopped.   On Day 20 I was in such burning pain the only thing that kept me from crying was that I knew the tears would burn more!  Though, I was teary. Today my face is painful again, with cracking & crusting & burning in the cracking.  Let me say, this stuff keeps right on working long after you stop putting it on!!!  Which makes sense since it doesn't show up all at once.  About 1/2 of my forehead is affected, my nose, off to the sides of my nose on my cheek, across & above my upper lip, my chin and off to the sides of my chin about a 1/4" from the sides of my mouth.  I didn't put the cream any closer than that.  I'm so thankful I put Emu Oil in my nose creases and corners of my mouth.  As it is I can't smile fully and I have to eat small pieces.  My energy seems improved as of yesterday.  Washing my face is misery, and afterwards.  Putting a cold, dripping wet wash cloth on my face feels so good.  But, that lasts only a short time.  Today I'm going to try putting some olive oil and, on another area, hylaronic acid (found naturally in skin) on some areas as well as Emu oil on another area.  I want to see which is better at this point.As far as the de-aging, my upper & side cheecks/face aren't' affected, nor are the outer sides of my chin.  So, if after this torture, if I look 5 years younger, it will only be in some areas, Ha!  I really didn't care about that.  I'd rather have Moh's surgury than go through this!   I tell myself I'm doing a good thing here, since, after all, I am going through this.  But, I'm doing everything possible, by natural means, to prevent skin cancer in the future.  Just expect the worst after you stop.  And, though it seems most members on this board are not pleased with the lack of information from their docs, I'm disappointed as well that all docs don't have  you come in to be seen after the two week period so they can better access when you should stop after seeing each individual once being on it.  I wish all dermatologists had to go through this before practicing medicine.  Believe me, THAT would take care of both problems!!!I'll be sure to let you know what oils bring the most comfort as well as tell you how long after treatment stops that I was no longer in pain.   Enjoy your holidays.  ButterflySwimmer Tue, 25 Dec 2007 00:00:00 GMT  On 12/25/2007 ButterflySwimmer wrote:Good morning, girls.Today is Day 22.  I stopped 2 1/2 days early.  But, I had asked my PA during week one, if my face started to burn so badly or crack or bleed, if I should go on, and she said "No, you can stop treatment at that point, as long as you have been  using the cream for two weeks."  Considering I was using the  highest dosage (5%) twice a day, and the manufacturer says 2-4 weeks, I felt confident stopping.  Also, I could NOT bring myself to put it on another time since, all of a sudden, it became painful.    Now, looking back, I should have stopped a couple of days earlier! My nose didn't get fire red all over until the day I stopped.   On Day 20 I was in such burning pain the only thing that kept me from crying was that I knew the tears would burn more!  Though, I was teary. Today my face is painful again, with cracking & crusting & burning in the cracking.  Let me say, this stuff keeps right on working long after you stop putting it on!!!  Which makes sense since it doesn't show up all at once.  About 1/2 of my forehead is affected, my nose, off to the sides of my nose on my cheek, across & above my upper lip, my chin and off to the sides of my chin about a 1/4" from the sides of my mouth.  I didn't put the cream any closer than that.  I'm so thankful I put Emu Oil in my nose creases and corners of my mouth.  As it is I can't smile fully and I have to eat small pieces.  My energy seems improved as of yesterday.  Washing my face is misery, and afterwards.  Putting a cold, dripping wet wash cloth on my face feels so good.  But, that lasts only a short time.  Today I'm going to try putting some olive oil and, on another area, hylaronic acid (found naturally in skin) on some areas as well as Emu oil on another area.  I want to see which is better at this point.As far as the de-aging, my upper & side cheecks/face aren't' affected, nor are the outer sides of my chin.  So, if after this torture, if I look 5 years younger, it will only be in some areas, Ha!  I really didn't care about that.  I'd rather have Moh's surgury than go through this!   I tell myself I'm doing a good thing here, since, after all, I am going through this.  But, I'm doing everything possible, by natural means, to prevent skin cancer in the future.  Just expect the worst after you stop.  And, though it seems most members on this board are not pleased with the lack of information from their docs, I'm disappointed as well that all docs don't have  you come in to be seen after the two week period so they can better access when you should stop after seeing each individual once being on it.  I wish all dermatologists had to go through this before practicing medicine.  Believe me, THAT would take care of both problems!!!I'll be sure to let you know what oils bring the most comfort as well as tell you how long after treatment stops that I was no longer in pain.   Enjoy your holidays. Butterflyswimmer,I hope you are feeling better today.   From what I remember reading, it seems to be, like you said, the worst right after you stop the treatment, but then starts healing pretty quickly.   I agree with what you said about having the doc check you out at the 2 week mark, I may just make an appointment at that time so that my doc can assess how the treatment is going.  It is just more money for them (more office visits) so hopefully I can work that out.Where did you hear about the Emu oil and is it hard to find?  Did you put on any other moisterizer (Aquaphor, vaseline, etc) while you were doing your Efudex treatment?   I keep reading that people do but my doc keeps saying not to put anything else on.   I am thinking one would have to put on sunscreen if they go out at all - did you?I have delayed my start date by a couple of days as I am just so nervous to begin the treatment as I know that there are several weeks of being miserable ahead of me.Again, I hope you are feeling better today and keep us posted on your progress.     Potterylady Wed, 26 Dec 2007 00:00:00 GMT Hey guys, I just saw all the activity on this thread so I thought you might appreciate a post I made on another thread (too many separate ones on Efudex).  Here it is: 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 What do you mean by "lighting up"? My Flouruoracil treatment is brand name "Carac" and I posted a lengthy comment entitled "Carac side effects" before I read your post. I should probably start commenting under Efudex, since there seem to be more contibutors using that brand product. I am about half way through my once per day for 4-6 weeks treatment for AK. Is some kind of a peel also effective in preventing cancers, or are they primarily for appearance?  barngirl (60 yrs old so hardly a "girl", but I do spend time in the barn. Maybe should be called oldbarnhag. :-) )  barngirl Mon, 07 Jan 2008 00:00:00 GMT It has been very helpful to read your postings so thank you.  I am beginning Efudex treatment on my face starting this Monday.  I have taken before pictures and intend on keeping a photo journal to help others in the future.  I am very nervous but feel it's going to be worth it in the long run.  With a 93% success rate in killng AK, I'm hopeful that I will avoid future surgeries.  Two years ago I had basil cell and squamous cell removed from my face (side of nose).  When the doctor finally got it all using Mohs surgery it left a hole a liitle larger than a quarter.  He took his time and did an amazing reconstructive job instead of a graph. Even after 80 stitches you can barely see the scar with make up.   I do not want to go through that again and hence why I'm doing Efudex.  It is a scary thought but I've put it off long enough.  I'm only 36 (as of today) and am ready to fight this battle.  I will be home for the next three weeks (two weeks of treatment and one for recovery).  I'll update the posting with my progress.  If anyone else is just startng your treatment let me know and we can support each other through the progress.  Thank you again to those who have shared their experiences.  I feel better armed with this knowledge.Best of luck! Momnmotion Thu, 10 Jan 2008 00:00:00 GMT Well, the experiences of others with Carac or Efudex are certainly scary but it is a great resource and comfort to not feel alone. I started using Carac on my face at night about 2 1/2 weeks ago for AK and my nose is getting huge, uniformly very red, swollen etc. I wonder if there was not more going on there than the dermatologist realized. There are selective spots which are very red and crusty on my cheeks and under my nose, but this nose thing is creepy. Does anyone have any knowledge of whether the Carac can make things worse if used on existing cancers? Should I call my derm?Y'all might like to know that systematic reactions really do occur. My eyes are dry and crusty in the morning, but most annoyingly my stomach aches and is upset and I am dealing with quick trips to the bathroom.  A neighbor of ours also had stomach upset (hers with Efudex). And I think the tingling in my lips is not a good sign...although I try to keep the Carac off my lips (at this time), I think they are starting to swell. Boy, don't we pay for our carefree youth! Thanks. Barngirl    barngirl Thu, 10 Jan 2008 00:00:00 GMT  On 1/10/2008 Momnmotion wrote:It has been very helpful to read your postings so thank you.  I am beginning Efudex treatment on my face starting this Monday.  I have taken before pictures and intend on keeping a photo journal to help others in the future.  I am very nervous but feel it's going to be worth it in the long run.  With a 93% success rate in killng AK, I'm hopeful that I will avoid future surgeries.  Two years ago I had basil cell and squamous cell removed from my face (side of nose).  When the doctor finally got it all using Mohs surgery it left a hole a liitle larger than a quarter.  He took his time and did an amazing reconstructive job instead of a graph. Even after 80 stitches you can barely see the scar with make up.   I do not want to go through that again and hence why I'm doing Efudex.  It is a scary thought but I've put it off long enough.  I'm only 36 (as of today) and am ready to fight this battle.  I will be home for the next three weeks (two weeks of treatment and one for recovery).  I'll update the posting with my progress.  If anyone else is just startng your treatment let me know and we can support each other through the progress.  Thank you again to those who have shared their experiences.  I feel better armed with this knowledge.Best of luck!Dear Momnmotion:I'm 43 & haven't had quite the history you have, but I did worship the sun for too many years and am paying the price now.  I am on Day 7 of Efudex treatment on my face and chest and would love another female to talk to in this process.  I've been emailing a guy in Utah who contacted me through this site.  He's way ahead of me though.  We went around the site b/c we both kept finding difficulty maneuvering around, finding messages, and losing messages while typing them.  Hopefully I will have better luck this time!  I'm just now starting to see signs of reaction on my face.  Some days I read postings on this site and feel a sense of commaradarie, then others I just get scared to death.  I'm doing a journal every day and taking photos.  Lighting in my house isn't great (and I'm my own photographer, making for some pretty goofy shots), so quality can be an issue, but I'm hoping it'll help me through it and I can share it with others to help them through too.  I'm a vain woman and I think I'm finding others are too - since I've only seen one photo journal from a woman and it stops abruptly at day 10. Anxious Tue, 15 Jan 2008 00:00:00 GMT  On 1/15/2008 Anxious wrote: On 1/10/2008 Momnmotion wrote:It has been very helpful to read your postings so thank you.  I am beginning Efudex treatment on my face starting this Monday.  I have taken before pictures and intend on keeping a photo journal to help others in the future.  I am very nervous but feel it's going to be worth it in the long run.  With a 93% success rate in killng AK, I'm hopeful that I will avoid future surgeries.  Two years ago I had basil cell and squamous cell removed from my face (side of nose).  When the doctor finally got it all using Mohs surgery it left a hole a liitle larger than a quarter.  He took his time and did an amazing reconstructive job instead of a graph. Even after 80 stitches you can barely see the scar with make up.   I do not want to go through that again and hence why I'm doing Efudex.  It is a scary thought but I've put it off long enough.  I'm only 36 (as of today) and am ready to fight this battle.  I will be home for the next three weeks (two weeks of treatment and one for recovery).  I'll update the posting with my progress.  If anyone else is just startng your treatment let me know and we can support each other through the progress.  Thank you again to those who have shared their experiences.  I feel better armed with this knowledge.Best of luck!Dear Momnmotion:I'm 43 & haven't had quite the history you have, but I did worship the sun for too many years and am paying the price now.  I am on Day 7 of Efudex treatment on my face and chest and would love another female to talk to in this process.  I've been emailing a guy in Utah who contacted me through this site.  He's way ahead of me though.  We went around the site b/c we both kept finding difficulty maneuvering around, finding messages, and losing messages while typing them.  Hopefully I will have better luck this time!  I'm just now starting to see signs of reaction on my face.  Some days I read postings on this site and feel a sense of commaradarie, then others I just get scared to death.  I'm doing a journal every day and taking photos.  Lighting in my house isn't great (and I'm my own photographer, making for some pretty goofy shots), so quality can be an issue, but I'm hoping it'll help me through it and I can share it with others to help them through too.  I'm a vain woman and I think I'm finding others are too - since I've only seen one photo journal from a woman and it stops abruptly at day 10. Hi there!  I was so glad to see yoru response.  I'm now day 3 of treatment and I keep having that feeling like it's not working.  There is absolutey no change on my face right now.  I know the reaction can be delayed so it's helpful to get others opinions.  I am also journaling and taking photos each day.  Let me know how your treatment is going.  Are you doing your entire face?  I am doing from my mouth up to my hairline.  I am also applyinig a very thin layer as I heard you can burn yourself applying too much.  What about you?  It's so hard to know if I'm doing this treatment the right way. Look foward to hearing from you.  Momnmotion Wed, 16 Jan 2008 00:00:00 GMT Hi Ladies,I am now finished with my 3 week, twice a day efudex treatment on my face (yeah!).  I finished two days ago and stopped a couple days earlier on a few areas on my face that were just very red and I thought they had enough.One of you mentioned that you were on day 3 and not feeling anything yet.   I wanted to let you know that for me, it was about 8 or so until I really started noticing the redness come out, and it was in areas that were not even close to the original AK that was diagnosed on my cheek.  I could feel a little tingling or slight itchiness on my skin before that, but it was not that bad at that point in time.   In fact, I spoke to my dermatologist over the phone at around that time, and she suggested doing a 4 week treatment instead of a 3 week treatment (yikes!).  Well  it was not too long after the 8th or 9th day that certain areas started lighting up (getting red).  Different areas on my face, definitely showed signs of redness at different points in time.  My nose, a prime sunburn spot over the years, did not have any red spots until fairly late in my treatment, which was surprising to me.   After talking to my dermatologist again, she said to go back to the 3 week treatment.As mentioned above, I had one small AK on my upper cheek, not too far from my nose.  The areas that really became red however, were the areas around my nose to the sides of my nostrils and onto the cheek part right there and then down the 'laugh lines' to the corners of my mouth and then down to my jaw line from there and across my whole chin.  I wasn't originally going to do my chin as one of the dermatalogists said if I did not have any spots there, that I did not have to.   I decided to do it because I was doing the rest of my face, so I figured I might as well and boy did that area get red!I was very nervous to do the treatment just like both of you and I put it off until after the holidays because I did not want to be miserable during that time.  It really is a difficult thing to go through, but once I started, I was determined to see it through knowing that it should get rid of, hopefully, a lot of the damage that I did to my skin over the years and especially in my teen and college days.With now being in my second day of not putting on the 'dreaded cream', I still look pretty bad, but my skin is not burning or itching like some people that have posted before.   After washing my skin is when I seem to get a little of the burning sensation and I have to say, Aquaphor has been a lifesaver!  I used Aquaphor in my third week of treatment as well after I had left the efudex on my face for at least 2 hours.  My dermatologist mentioned that I could use some hydrocortisone, but this really made my skin burn.   The Aquaphor seemed to provide relief almost immediately - I just patted a little on in certain areas (mostly the red areas around my mouth and chin) and it really stopped the pain, so I highly suggest you get some. I have taken photos along the way as well so that I can remember the changes along the way and the timing of these changes.   I am pretty vain so that I don't think I will want to post them for all to see, but would be happy to let you guys know what was happening at different points in time.  Are you both working?  I feel like I am lucky to work from home (and also part-time) as I really would have had a hard time going out in public looking like I did (and still do).   In fact, I have hardly gone out at all in the last two weeks.  I am hoping that the healing process will go by fairly quickly, at least to a point where I can try to cover up some of the redness with make-up.   My dermatologist said along the way, that I could wear make-up and then could feel more comfortable going out, but when your skin feels all tingly, tight and sensitive, I did not want to try and pile on a bunch of make-up as I thought it might make my skin feel worse.Anyway, hang in there, keep up with it, and definitely call your dermatologist along the way if you have any questions.  I would be happy to answer any of your questions along the way to let you know what I experienced.   Best of luck!I Potterylady Thu, 17 Jan 2008 00:00:00 GMT Hi!!  This is a FANTASTIC idea!! I need a buddy too...female, 45 and have to start treatment on January 28th.  Two weeks, twice daily 5% Efudex cream.  I'm scared to death!!Yesterday, I told myself it wasn't necessary and I'll watch and wait but that could be destructive.  I've had one lesion on my temple removed surgically last August and a couple of pre spots frozen so my derm wants to "jump ahead" and hopefully cure me.  YIKES...how long will I have to hide out after starting this stuff?Did I say YIKES loud enough???  YIKES!!!! SpankyB Thu, 17 Jan 2008 00:00:00 GMT I will try to get this posted in the right place!  (2nd attempt) Hi All,I just finished a 21 day treatment of Carac on Jan. 14.  The area being treated was between my upper lip and nose.  Two years ago I treated my forehead and was very pleased with the results.  Both of these times was under the recommendation of my dermatologist for AK's.  I experienced skin tightness, extreme redness, a bad taste in my mouth, slight queasiness, and a headache some days. I have read most all the posts (especially the 300+ under "Side Effects of Carac or Efudex")and they were so helpful!  Just to know that others were having some of the same side effects was reassuring.  I was instructed to use only Vaseline and sun screen (Neutrogena Sensitive - titanium dioxide) if needed during treatment (and Polysporin for cracks or bleeding).  The Vaseline was a life saver!  It made the whole area so much more comfortable.  I think I would have had a much rougher time of it if I had not used this.  As some others have posted, I too, was hesitant to put petroleum on my face, but it relieved the itching, burning and tightness.  (A lot of people have used aquaphor too, but I could not locate that in my area.  It has petroleum in it also.) When I saw the doctor Monday, she prescribed an ointment called "Biafine" (pronounced Bee-a-fen) for healing.  http://www.biafine.orthoneutrogena.com/ Again she said use only this or Vaseline (I'm using both).  The Biafine is for full thickness wounds, burns, grafts, skin damage from radiation treatments, etc. and for AK treatment.  It's very soothing, but I still need the vaseline to help with the tightness around my mouth (so I can talk and eat!).  The redness is fading some each day.  I'm glad to be done with this treatment and will be thinking about those of you still going through it.     Private Reply Quote   Reply to This Message redone Thu, 17 Jan 2008 00:00:00 GMT Hi!  Thank you for the reply.  I have vaseline but no Aquaphor.  I'm going to pick some up.  When it does get worse I want to have whatever I need on hand.  What kind of Aquaphor do I pick up?  I know it's critical not to get lotion with anything in it.  Thanks for the help! Momnmotion Fri, 18 Jan 2008 00:00:00 GMT Here is the website for aquaphor -http://www.eucerinus.com/products/hb_aho.html I think there is only one kind.  I just used vaseline and it worked fine.  Two years ago when I did my forehead I did not use anything but the Carac and water.  I don't remember that skin being as tight as it was around my mouth this time.  On this message board, there's a "Side effects" topic with over 300 posts.  Lots of people mentioned aquaphor.  I read through all the posts (it took several days). Even though the posts are from awhile back, there is still useful information because all of our situations are different.At the pharmacy, I was not able to find the aquaphor, but I was looking on the shelf where the vaseline was.  I think perhaps I should have looked with cosmetics or even baby supplies (or asked someone). I'm feeling much better each day, although the skin is still peeling a lot.  It's regaining the elasticity and I can get my mouth open to eat easily.  I also do some choral singing and am feeling back in shape to pronounce words clearly now.  Take things a day at a time and hopefully it will pass quickly for you too. redone Fri, 18 Jan 2008 00:00:00 GMT You should be able to find Aquaphor at your grocery store or drug store.   I got mine a long time ago, I think for my kids diaper rash or eczema, whih which would have been several years ago.  If you don't see it in the ailse with vaseline, etc., go ask the Pharmacist.  Even though it is not prescription, I think I have seen it up at the pharmacists' counter.I am now 4 days post Efudex (21 days 2x a day on face) and am finally feeling like I am starting to heal - but still not comfortable enough to be seen in public.  I am now walking around with a thick layer of Aquaphor on my red skin, not very attractive, but it feels a lot better.  I am hoping that I only have a few more days of hibernation!     Potterylady Sat, 19 Jan 2008 00:00:00 GMT