One patient with glioblastoma still alive nine years later
by charlevoix on Sun Jan 23, 2011 05:18 PM
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 . 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 . 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.
by suziespip on Mon Jan 24, 2011 02:37 AM
Oh Deb Deb Deb Thank you so much for taking the time and trouble to write this .. No other site has given me so much hope and relief.. I am 71 and am now on the 15 day of Carac..Sometimes its looks like I am on the downhill and then all of a sudden I look like I was in a fire., Mostly on the hairline and the smile lines. The smile lines seem to inflame the most. Thabk you for saying not to use moisturize. No matter what I tried even that one the Dr said to use It burned like crazy. It feels the best when I am out in the cold. It also looks good in the am. I put the carac on in am when I get up and wash at night. Leaving my face free. I was instructed to use it once a day. I don't think th DR prepared me for all this He made it seeem like a rash and uncomfortable..I sleep pretty good but now that you said week 3 was bad I am scared. I feel so isolated as everyone seems to say see I told you so about the sun The Dr said people even have this where sthe sun doesn't get to it.
by charlevoix on Mon Jan 24, 2011 02:21 PM
Hi Suziespip, Thanks so much for your note. At day 15 you are really in the trenches. You have my utmost sympathy and support. I don't know how long you are using for, but this is crunch time in keeping up your resolve. I found that rather than worrying about tomorrow, I just needed to gather the courage, one application at a time. Then, I concentrated on making it through that day. Tomorrow will take care of itself. I really don't think most doctors who have not used this themselves realize how hard it is to muster the willpower to "stay the course". I am now on my sixth day post treatment and all of a sudden, I feel like I am turning the corner. Last night I slept "normally". I had days--especially in the third week---when I was really discouraged. I hurt, I looked awful and it was a real chore to keep on with the program. Now, even with only six days to to look back, it was so worth it. You never want to do this again, so just keep making yourself hang in there. You are not alone. I was staggered to learn that more than 14 million prescriptions have been written for Efudex over the past years. Can you imagine all that suffering? At yet, it is used because it works. Hang in there Suziespip, the next few horrible days of using the medicine will save you much pain and grief in the future. The medicine will work and your sun damage will be fixed, by your own body. I remember so clearly the burning and wanting to give up. Right now, I would never have forgiven myself, because I would have been so close. It is true that AKs and other skin cancers can occur even where the sun does not hit, but the sun exposed areas are more at risk. You are well into the cure, don't give up, don't give up, don't give up. You can do this. Deb
by suziespip on Mon Jan 24, 2011 03:37 PM
Oh Deb I am sitting here and crying thank you thank you You are the only person here who knows what I am going through this mornin my right eye is almost swollen shut..My face is still burning and as soon as I get up I can't wait to go outside after I wash my face I feed the birds take the dog out and it feels so good in the cold. Then I come in and put Efudex on. You have no idea how much you mean to me. Tomorrow I am going to the Dr and will see how much longer I have to go. I just refilled the RX as the first tube is done, the tubes are 30gm What did you have to pay for yours.With your help I WILL MAKE IT. God bless you
by charlevoix on Mon Jan 24, 2011 03:54 PM
Hi Suziespip, I remember vividly the swollen eyes! The swelling seems to be posturally dependent---it was always worse in the morning after I had been laying down overnight. During the day, gravity helped to drain the swelling and by nightfall, it was much better, only to be repeated when I laid down again. That is terrible, but normal. I am glad you are going to the doctor tomorrow. He will with one look be able to see if you are finished with your treatment, and if not, he will be able to gauge how much longer. I live in a cold climate too, and found that "cold helped". Since you just refilled your RX, you most likely will not need more since your first tube lasted more than two weeks. That angry, hot, redness you see is your body destroying the precancerous/cancerous cells. You have done the hard job today---you made yourself put on the medicine. You must do the same tomorrow and then you will talk to your doctor. There is no point in worrying about what he will say. You will know tomorrow. Please write and let me know how you are doing. You can do this, you are almost there. I am with you in spirit, I know how awful it is. Deb
by suziespip on Mon Jan 24, 2011 04:06 PM
I can really say dear dear friend Since I live in Wisconsin cold is always an option Since reading from you I have a joy in my step and I want you to know God sent you to me I NEVER go on line and visit I don't even do face book I will let you know what the DR says tomorrow One day at a time dear friend thank you
by jumper on Mon Jan 24, 2011 06:48 PM
On Jan 24, 2011 4:06 PM suziespip wrote: I can really say dear dear friend Since I live in Wisconsin cold is always an option Since reading from you I have a joy in my step and I want you to know God sent you to me I NEVER go on line and visit I don't even do face book I will let you know what the DR says tomorrow One day at a time dear friend thank you
On Jan 24, 2011 4:06 PM suziespip wrote:
The information you have been given is true. I used Carac for 21 days in the heat of Texas in August. My "new skin" is finally beautiful though I WOULD NOT encourage anyone to do this treatment in order to have a better complextion! It is REAL CHEMOTHERAPY with REAL SIDE EFFECTS.
Take it day by day. After I quit using the cream the burning and itching became unbearable. My dermatologist tried several things but none helped. The best that I found was a aloe vera cream that contained 4% litocaine - from Florida. The most litocaine you can get OTC. You can apply as much as you want.
Read as many post blogs as you can - these will help you know you are not alone - many of us have gone through the same Hell and survived. Shockingly some use this cream every year. I know - I can't imagine. I've already told my dermatologist...NEVER - EVER! So don't even ask! I'd rather have 100 "moh" surgeries!
Having a fan by your bedside is also helpful. I don't think it's harmful to apply Aquaphor 2 hours after Efudex or Carac. I believe by that time the cream has done it's work. The product information will explain this.
The dermatologists don't even make an appointment to see us until 3-4 weeks AFTER we have stopped the cream. They never see the REAL effects we are having. They know what they are and don't want to see us. Unless like I had - the uncontrollable burning and itching - they never see us DURING treatment. My dermatologist was shocked by my reaction to the cream. They've never used the cream and the tiny photo of the man in the brochure doesn't do the cream justice as anyone knows who has been through the treatment! They should prepare us for what REALLY is going to happen! On the patient information of Carac it even admits that the skin will become "UNSIGHTLY". An understatement!!!
As you've been told, don't stop now - hang in there! Take care and keep in touch. We're here for you!
by HK355 on Tue Jan 25, 2011 03:10 AM
You're almost there. Keep at it as it will all be worthwhile in the end.
Unfortunately the worst part (for me) was the few days after treatment ended. You have to continue to bite the bullet. About a week after you finish applying the cream you'll start looking and feeling much better. If found the rate of recovery to be almost exponential following that first week.
You were asking about cost. Someone on another thread said they were getting generic Efudex from a Canadian online pharmacy for $39 a tube.
Good luck and God bless.
Cheers - Brad
by pattithepoo on Tue Jan 25, 2011 03:15 PM
Superb written documentation and information in this post.
Efudex survivor (^.^)
by suziespip on Tue Jan 25, 2011 04:27 PM
I can only pray that this is all worth it Yesterday after reading a post form deb Today day17 I woke to a swollen face red itchey blottchy. Thank God I go back to the Dr today Suzie
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