Lessons learned and tips on using Efudex or Carac

On Jan 23, 2011 5:18 PM charlevoix wrote:

Five days ago I completed a twenty one day course of Edufex (5 % Fluorouracil) 2X day and I thought I would take a few minutes to write down lessons that I learned along the way in the hope that they might be of benefit to others going through the experience.

1. When I got my prescription for Efudex 40gm. tube, I went to my local Walmart pharmacy and found it was very expensive (>$400). I went online and finally ordered the generic equivalent from Canada from a place called PharmStore.com "" target="_blank" rel="nofollow">http://PharmStore.com " target="_blank" rel="nofollow">PharmStore.com . It cost $39.00 including shipping and came as (4) tubes of 10g. each. My treatment was for my entire face (only) and I ended up using 1 1/2 of the tubes. I picked this source because they got a 5 star rating from pharmacychecker.com "" target="_blank" rel="nofollow">http://pharmacychecker.com " target="_blank" rel="nofollow">pharmacychecker.com . The medication was delivered promptly and it looked and worked the same as Efudex from the USA.

2. I realized quickly that the best way to clean my face each time before I applied the cream was to use plain water ONLY---no soap. Many soaps contain perfumes or additives that will irritate damaged skin. The only exception to this would be if for some reason your face actually had dirt or debris on it. For most normal daily routines, the rinsing with copious amounts of water morning and evening was plenty to keep it clean. To dry my face after rinsing it thoroughly with lukewarm or cool water (hot water actually hurt and cold water closes the pores), I used a clean towel to dry my eyes and then a clean, soft, absorbent, white (no dyes) paper towel to blot up the moisture on my face. This worked very well for me. By covering my face with a paper towel and gently blotting (not rubbing), it effectively absorbed most of the water with minimal irritation, even to the angriest parts of my skin. I then just threw away the paper towel, minimizing any chance for infection.

3. The standard directions are to wait 10 minutes after cleaning your face to apply the medication. I learned that this is critical. A damp face absorbs the medication more readily than a dry face and if the medication absorbs too quickly, it will result in a much more aggressive inflammation than if it is applied dry. I learned this lesson the hard way. Once when I was in a hurry, I dried my face and immediately applied the cream. The next day my skin was much worse, raw and hot and inflamed. I never made that mistake again. From that moment on, I literally set a timer for 15 minutes after washing and drying to make sure it was perfectly dry before I put the cream on. My face still became increasingly irritated, but never so quickly as when it was damp.

4. The makers of Efudex direct you to apply a THIN layer of the cream and to "rub it in until it disappears". This is fine for the first few days of the treatment, but once the skin becomes red, hot and irritated, it is really hard to do. What I found was, that my tendency as my skin deteriorated was to put on thicker layers of the cream, both because the cream felt good on my burning skin and secondly because it was painful to rub it around. This was a mistake. What I realized was that if I inadvertently applied a thick coat in any one place, the next day that site was particularly hot and sore. The research data is quite clear that putting on more at once does not accelerate the curative process, it only makes the side effects worse. The lesson: put it on as thin as possible, even when it is painful to spread it around. Thin really means thin, you will pay the price the next day if you gob it on. Along these same lines, the manufacturer recommends avoiding the lip and eye area. THIS IS CRITICAL. The skin around the eyes is very thin and sensitive. You do not want to get any closer than an "eyeglass pattern" near your eyes. No medication at all between the eye and eyebrow. When treatment is over, you will look like an ad mocking tanning booths---with a sunglasses outline of untouched skin around your eyes. Similarly, you need to avoid getting any closer than 1/2" or so away from your lips. Your lips are exquisitely sensitive to this medication. Another lesson I learned the hard way. One day at the end of the second week I must have inadvertently touched my lower lip with the medication. The next morning I had a large "fever blister" on the lip. I had no pain and it was not an actual cold sore, but it was a huge swelling and took about four days to gradually fade away. The only explanation I could think of was that perhaps I touched it in my sleep. After that, I was even more careful never to ever come close to my lips. They will react quickly and badly if you do.

5. Try to apply the medication every twelve hours to the extent possible. The idea is to provide a constantly spaced application. To help with this and also to help with my motivation, I downloaded a calender for the month from Google which I placed next to my sink in the bathroom. Each time I applied the cream, I recorded the time. It actually helped me to keep track of the spacing and for some odd reason, helped me to keep going, especially that third week when I was counting the days until I was done.

6. Try NOT to use a moisturizer if possible while you are using the medication. I know this is counter intuitive, but most moisturizers have a petroleum or vaseline component to help the skin retain its moisture. This forms a barrier and affects how the medication is absorbed. A number of people wrote in that they waited two hours after applying the medication and then applied a moisturizer, but then they would need to scrape it off before applying the next dose. Vaseline does not dissolve in water and to remove it literally requires scraping or wiping it off, a painful process. Even then, the amounts left in the skin affect the rate and amount of the mediation that is absorbed, slowing and partially blocking it. If you can possibly do it, avoid all moisturizers in the medication phase and then once you do the final rinse your final day, moisturize like crazy during the healing process. The medication itself is in a soothing cream carrier. I did not use anything else on my face during the entire three weeks.

7. Your skin will turn red, and hot and puffy, it will eventually blister and weep and may get crusty, this is normal. Nausea, vomiting, bloody diarrhea and hives, are NOT normal, they may signal an allergic or bad reaction, you need to contact your doctor for any of these symptoms. It is important to know what the endpoint goal is. The skin will go through a process. First it will get blotchy and red and then increasingly irritated and puffy and red and hot and finally it will start blistering and weeping, especially in the problem areas. This in medical parlance is called the "erosion" stage. This is the goal of the treatment. For me, after two weeks, my skin was very red and hot, but not blistering---that did not occur until the third week. If you have gone two weeks and have not blistered, you may need to go longer. Conversely, if you have completed three weeks and blistered over all the areas of concern, you may be finished and not need to continue for a fourth week. Each person is different. The important thing is that you not depend on the calender to decide when you are "done", you need to look at your face and see if you have reached the erosion stage. Your doctor can verify that you are there. Many people wrote into the blogs wondering if they were on it long enough---I looked at the medical studies, they all have "erosion" as the endpoint, whenever it occurs.

8. For the first week I did not require any pain medication. By the end of the second week, my skin was hot and red and looked very angry. I began by taking tylenol 1 1/2 extra strength tablets (750mg total) 4 hours or more apart. I was careful not to exceed the maximum recommended dose of 8 (500mg) tablets in 24 hours. By the end of the third week, I was taking the 1 1/2 tylenol around the clock in order to sleep (again, don't exceed 8/24 hours). I did some research and found that tylenol and ibuprofen work very differently, and there is no contraindication from taking both together. In my third week when I had so much discomfort, I began taking 1-2 ibuprofen concurrently with the tylenol. Dosing on this is 1-2 (200mg tablets) every 4-6 hours, not to exceed 6 tablets per day. I alternated this with the tylenol, taking one or the other every two hours. I am now on day five after stopping the Efudex and am still taking 4-5 tylenol over the course of the day, but each day I take fewer. My symptoms have changed and now my primary source of irritation is itching as my skin peels, although I still have times each day that my face feels very hot. I never took anything stronger than the tylenol and ibuprofen.

9. It is important to have realistic expectations about the course of the treatment. I knew that the medication would become increasingly uncomfortable to use. What I did not fully realize is the time it would take to heal after the active treatment was over. I am now on day five. For nights 1-3 after I was done, I actually slept even worse than I did on the Efudex. For the first two or three days, my skin continued red and hot, but now in addition I had severe itching. For some reason this seemed more intense at night. It was at times almost unbearable.

10. As soon as my 21 days were up, having reached the "erosion" stage, I stopped the Efudex and began applying Aquaphor, a moisturizer often recommended on various threads on this site and others. The Aquaphor works well, but is is MESSY. I added a second pillowcase to my pillow, but the stuff still gets all over. It also would catch the peeling skin and hold it next to my face, contributing to the itching. I probably put too much on in the beginning, now I am trying to apply a very thin coat and then adding to it every few hours. Interestingly enough, I found that blotting the excess moisturizer with a paper towel worked very well to soak up the remaining stickiness. Even then, it is very greasy and gets all over. I tried Benadyl at night for the itching, knowing it would make me sleepy, but it really did not seem to help. I would only doze in and out awaking to the burning and itching. On day five, that has eased. Now it is primarily itching and even that is not too bad. I still look awful, but I am definitely feeling better.

11. One final note on how my individual skin reacted. As I mentioned earlier, I medicated my entire face, including my forehead for 21 days, morning and evening. At the end of that time, I had areas that had absolutely no reaction at all--they looked like normal skin. These were areas near my hairline and under my bangs that would have received very little sun exposure over the years. I had transition areas (just under my bangs to my eyebrows) that must have also received some protection. These turned red, but only after 9-10 days of treatment. The remaining areas started out spotty, like a rash, but fairly quickly united so I had a uniformly red, hot, swollen face including my nose, both cheeks, and chin. Eventually, in the third week, the areas on my cheeks that had the original AKs (actinic keratosis) blistered and began weeping, or exuding clear fluid. I had several other areas that blistered that must have had bad sun damage that I did not know about (no AKs before). At the end of the time when I quit, not all of the skin had reached "erosion" stage, but all of the known "problem areas" and several others had. I believe this is normal. In other words, unless your whole face is covered with AKs or other basil cell cancers, you will probably not have blisters everywhere. I showed the entire spectrum of reaction from none to bad blisters at the end. Your doctor will know what your endpoint is, try to hang in there until you reach it. I was pretty much exhausted by the end of three weeks.

I thought I would post these observations while they were still fresh in my mind in the hopes that they would help others just beginning or in the midst of the process. I realize your experience may be different from mine and I would encourage others to add tips or lessons they learned to this thread and wish each reader well as they go through this rather humbling process.

Deb

Thank you for this informative and very helpful "diary". I had used effudex on face,neck,arms back fox 20 yrs ago. I remembered the agony at every stage. Dr suggested a new treatment for my face, I Am now 66 yrs old, very fair skinned, use lots of sunscreen. This photodynamic treatment (oft) was just a clean up for my face. Dr had a new spa, I was willing .he suggested it did the same as effudex in shorter period of time. In pdt a blue chemical is applied to face with pencil applicator, the 18 minutes under ultraviolet light machine. No sun/light exposure for 48 hrs. I decided to treat my neck with effudex at the same time as the light machine could not reach around that far. Well, after 10 days, my face has had modest blistering and is now clear. I am eager to see if then Dr feels the face tear,want was successful. It was a breeze compared with the effudex on my neck. After the same 10 days, my neck is red, blistered, oozing, etc. you describe this condition perfectly. I must be very sensitive, as I am in erosion stage after 10 days. At least I hope I am. I want to stop at the 2 week mark, only 4 days from now. Thank you for sharing the details of you experience. My gift to you is the suggestion that you try the photodynamic treatment instead next time. They say they can adjust your position under the light machine to handle arms, etc. I hope they so I'll find out if they will treat my upper back with pdt. Pdt takes less healing time. I apply moisturizer after 2-3 days. No pain when compared with effudex. They tell me it is covered by my insurance plan. We will see. But the effudex cost me $198 at Walmart with my insurance discount. I can recommend the pdt . Nurses suggest I also ask about another cream called aldlara for my arms. Lots of new treatments now available . I am not surprised given the agony of effudex. I will advise if these other are effective God bless Terry

Thank you for this informative and very helpful "diary". I had used effudex on face,neck,arms back fox 20 yrs ago. I remembered the agony at every stage. Dr suggested a new treatment for my face, I Am now 66 yrs old, very fair skinned, use lots of sunscreen. This photodynamic treatment (oft) was just a clean up for my face. Dr had a new spa, I was willing .he suggested it did the same as effudex in shorter period of time. In pdt a blue chemical is applied to face with pencil applicator, the 18 minutes under ultraviolet light machine. No sun/light exposure for 48 hrs. I decided to treat my neck with effudex at the same time as the light machine could not reach around that far. Well, after 10 days, my face has had modest blistering and is now clear. I am eager to see if then Dr feels the face tear,want was successful. It was a breeze compared with the effudex on my neck. After the same 10 days, my neck is red, blistered, oozing, etc. you describe this condition perfectly. I must be very sensitive, as I am in erosion stage after 10 days. At least I hope I am. I want to stop at the 2 week mark, only 4 days from now. Thank you for sharing the details of you experience. My gift to you is the suggestion that you try the photodynamic treatment instead next time. They say they can adjust your position under the light machine to handle arms, etc. I hope they so I'll find out if they will treat my upper back with pdt. Pdt takes less healing time. I apply moisturizer after 2-3 days. No pain when compared with effudex. They tell me it is covered by my insurance plan. We will see. But the effudex cost me $198 at Walmart with my insurance discount. I can recommend the pdt . Nurses suggest I also ask about another cream called aldlara for my arms. Lots of new treatments now available . I am not surprised given the agony of effudex. I will advise if these other are effective God bless Terry

Well done Deb. 

This is exactly the type of information patients need going into treatment. None of this was forthcoming from my dermatologist and what information I managed to find came from internet research. I read other people blogs and in the end did my own to help people manage expectations.

Thanks for sharing this.

Best regards - Brad

Hi,

I have done both Efudex and PDT (photodynamic therapy). Unfortunately, PDT is only skin deep. Efudex on the other hand is the real deal. Efudex, as you may already know, is FDA approved for actinic keratosis and basal cell. But in fact, anyone that has used it knows it attacks more than just those two abnormal cell types. In my case it went after some melanoma which I later had biopsied and removed. Four dermatologist said it (what turned out to be melanoma) was nothing to worry about. I though listen to what Efudex was telling me and demanded a biopsy which in turn saved my life (the melanoma had penetrated into the deepest skin layer).

Efudex is the gold standard by which all other treatments are measured. I applied Efudex twice a day to my face, ears, neck and upper chest for almost five weeks. In retrospect I wish I had gone seven - or at least seven on a few particular spots. I think once you get to five weeks you can probably apply it to only those areas/spots which continue to respond.

I would strongly advise going the efudex route over PDT. PDT is kind of a joke - it's largely cosmetic. Sure, Efudex is a real challenge, but done right it is amazing.

A little side note: Someone I worked with did Efudex recently and went only two weeks before baling. He said his dermatologist says that two weeks is enough and that the dermatologist should know because she has done it now herself several times, and each time for two weeks. I laughed! I, me, did it for five weeks and only, and I stress the word “only”, needed to do it once. So my advice is to bite the bullet and do it for a minimum of five weeks and continue after five weeks on those spots that continue to respond to the Efudex.

I am so thankful to have found this board (and for Deb for posting all the helpful advice in the first place), and yet I think it's sad that so many of us receive contradictory information (if any at all) from our doctors.  I am astounded at how little medical support most of us receive despite the fact that this is such a severe form of treatment.  

I am writing because my experience wasn't nearly as harsh as many others I've seen in blogs or forums, and I want to assure those who are just heading into treatment that not every person reacts so harshly.  You may, or you may not; depending on your situation.  While it has in no way been fun, I think it is vitally important to realize that each person reacts differently and has been given this treatment for different reasons or in different stages of their pre-cancerous (or cancerous) journey.

I think one of the single most important differences from other posts was that my doctor told me to moisturize like crazy from Day One.  She suggested Oil of Olay or some other facial moisturizers, but that didn't make sense to me since many of those are perfumed or have other chemicals in them.  I’m a bit of a holistic person and preferred chemical-free coconut oil for the first week, until I started “lighting up;” then as it started to burn and itch more, I switched to Aquaphor. 

I've read that other people were told not to use Aquaphor until the healing process begins; but I think the Aquaphor was instrumental in keeping my pain to a minimum.  My doctor said the key is to not let your treated skin get dried out and cracked, because that's what causes so many people so much pain and unbearable itching.  I've read that people were told that Aquaphor would hinder Efudex from working, or might make it take longer to work.  I am on Day 13 (of 14) and am starting the erosion stage, right on schedule.  And yet my pain has been completely manageable, to the point where I haven't even taken Tylenol yet.  

I waited for one hour after applying the Efudex (two times a day for two weeks), but then applied Aquaphor as often as I wanted.  As I said I am heading into the erosion stage, but it's hardly any more painful than a scratch or a minor sunburn; and my doctor said that's because I've kept my skin moisturized and never let it get dried out or cracked.  The most irritation I've experienced was the fifteen minutes between washing my skin (with warm water, no soap, before each application) and applying the Efudex, and then sometimes the one hour I waited until I could apply Aquaphor.  I've still experienced some minor burning and itching, but certainly not the worst thing I've endured in life.  I think the sunburns that got me here were worse than this!

I also admit that the people who have to do their whole face definitely seem to have a harder time of it; I only had to do my nose and bridge between my eyes up onto the forehead; in addition to my entire chest and the backs of my hands.  Although my chest looks far worse, my nose hurts more; I think that anywhere on the face is simply more sensitive.  I've seen the photos of people whose entire face goes crazy; I can't imagine how they deal with it.  

I've also seen many posts where people are questioning why we each have been given different lengths of time for treatment (everything from two weeks to eight weeks or more).  I called my doctor today to voice my concern over that; since I was only told to do it for two weeks, and I'm not really in the overly cracked and bleeding stage, I wondered if I needed to go longer.  She said that people who have to go longer have more severe risks or caught theirs a little later than me.  If you only have mild concerns and early stage AKs, you might only need two weeks of treatment; if you have more severe concerns or sBCC, then you are probably going to have to do 3-6 weeks.  And, again, she said I won’t reach the cracked and bleeding stage, because I’ve stayed moisturized. 

I’m not a doctor, but from what I’ve read I think the main “telling point” of when you should stop is when you start the erosion stage. I think some people have kept applying the Efudex after their skin is shedding; and that must be unbearable. I would check with your doctor, but I think that’s the point where you are supposed to stop, no matter how long you were initially told to go. 

Again, I hate to steer anyone wrong; but the constant moisturizing has kept my experience a little more tolerable (in addition to the fact that I am going through this a little earlier than some people). Of course, only time will tell if all this is wrong information; and if I’m back here in a year or two doing another round, I’ll be sure to let you know!

Best of luck and prayers for a quick and relatively painless recovery to all of you!

 

 

 

Thank you all for the very informative post from your experience with Carac. i will start tommorrow night after i pick up the script. i only need to use it on my lower lip for about ten days. Sounds like its going to hurt and be ugly. I was treated with nitrogen oxide last July. For my 6 months follow up they think there may be very few small cancer cells remainimg. They say this chemo cream is the best availible to zap it gone forever! The paper towel idea is one i hope works for me. i was told some foods may be unfortable to eat.. shakes, warm thick soup(not spicy), applsauce, banana, i'll see what else once i get going. Any other advice is welcomed.

Thank you so much for your posting.  I found it most helpful.  I am now on Day 16 with Carac and feel like my face is on fire.  Having tried laser surgery and freezing, the dermatologist recommended Carac which she said was terrible nasty, and painful, but effective.  Now I wish I'd asked more questions!  Unfortunately, my dermatologist is 140 miles away and a trip to see her at this point is out of the question.

This blog has been a great help.  However, I'm confused about using a moisturizer.  I'm to the erosion stage (I think) and my skin is cracked and peeling.  I bought some Aquaphor but am hesistant to use it although the Carac directions say that one can apply a moisturizer 2 hours after application of Carac.  So far, I've held out with the moisterizer but things are getting pretty dire.  I'm doing my entire face and believe, at this point, my appearance could scare small children!

Any advice would be appreciated.  Thanks!

Dear Valkyrie526,

140 miles to see your dermatologist sounds dreadful! Sometimes when I have concerns about my medication or need quick professional advice, I use this website: http://bit.ly/VmZkTj These are real doctors who can answer your questions. I really hope this helps you. P.S. I'm sure you don't look that bad ;) good luck! 

I have one more thing to add to this discussion:  what NOT to do.  Yesterday, I was on Day 16, and because my skin was dry and painful, I decided to use Aquaphor.  It helped only marginally with the dryness but did nothing to help the itching.  That evening, before I went to bed, I decided to remove the Aquaphor and apply Purpose, which I've always used as a moisturizer, instead because the Aquaphor is very greasy and didn't seem to help much.  This was a HUGE mistake!  Immediately, my skin began to strobe in pain and for the first time, I had to reach for 1/2 of a pain pill and ice packs to keep from going nuts.   After several hours, the pain finally calmed down. 

Why this happened I have no idea, but I don't want anyone else to make this mistake.  From now on, I'll just leave well enough alone and soldier through the treatment.  At Day 17, I can finally see the proverbial light at the end of the tunnel.  Day 21 is my last day of treatment. 

Dear Fellow Sufferer,

Thank you for your advice and the great website.  I will share it with my friends.  Yep, it is a bear to be so far from one's doctor, but I live in one of the most remote and undeveloped places in the US (no Malls for 140 miles, etc.) and have to travel to see specialists although I do have a good general practitioner only 37 miles away.

To tell the truth, I really do look like heck, but that's OK.  I only have five more days to go and will look better in a month or so.  I'm treating my whole face so I should end up with good, clear skin and no skin cancer which is worth the effort.  Until then, I can scare little kids by looking like something from the Black Lagoon.  What fun!  Yep, being a blond-haired, blue eyed Swede can be fun, but the sun is not our friend.  I wish that all the folks who are going to tanning parlors paying to get skin cancer could see what's happened to us.  It might make them think!  I never did this but worked outside all my life and had far too much sun exposure.

Valkyrie