CancerCompass message board discussion started by Jef1963 on 2/8/2008 http://www.cancercompass.com/message-board/message/all,20763,0.htm Wed, 20 Aug 2008 00:00:00 GMT Wed, 20 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I am really embarrased about this but things were going so well and I thought I was healed enough to use something besides the bacitracin, vaseline and hydrocortisione on my face.So I put on some Nivea creme with E and jojoba as well as some other ingredients like alcohol, glycol etc...No burning at all until about three hours later I looked in the mirror and was as red as a beet.  I felt really stupid. I washed it all off and I was burning just like the peak of treatment again.  Now I was really mad at myself because I thought I messed myself back into the dark ages.Well anyway, I put on the the top 3 again and healed pretty much overnight and am back on track but I would have been better off if I had never strayed.    All in all I think I cost myself one more weekend at home and two more nights of messy pillowcases.   Sunday night I get my good sheets back again (fingers crossed) Jef1963 Fri, 08 Feb 2008 00:00:00 GMT Jef1963,    What was your treatment protocol ? I start tonite with 1 application per day for 14 days. I know it has to be done, but I am really nervous. Also, have you ever heard of Photodynamic Therpay. t I've read, it seems comparable to Carac, however, my dermatologist AND my promary care doctor both said to use Carac (both have little experience with PDT). Brian  bfoley Sat, 09 Feb 2008 00:00:00 GMT Also, have you ever heard of Photodynamic Therpay. t I've read, it seems comparable to Carac,Hi Brian,  the "blue light" therapy can be a good choice for "some" cases.  In fact, I am very fair and my arms and hands had so many AKs that I am doing the 5-FU solution (note our recent posts). But for my face, my dermo does do the aminolevulinic acid and light therapy and I will be doing that next.  It can be much less "trauma" and is very selective targeting only the "bad" DNA and the preventing the RNA developement, hence killing off those areas.It may be that your dermo just does not have the light or not trained in the therapy (my doc actually was involved in trials serveral years ago and uses it for many cases).  It can be less time in healing/errosions, but every case is different.Just google aminolevulinic acid and you will find lots of info.  In fact here is a basic info page.link below.  Good luck, Whiteyhttp://www.medicinenet.com/script/main/art.asp?articlekey=44 whitey1 Sat, 09 Feb 2008 00:00:00 GMT Hi, I would read the "Efudex the easy way thread" all the way through as there is some conflict halfway through that gets resolved.  I've learned my lesson to stick only with Vaseline, Bacitraycin (which are both very similar to the white petrolatum base that makes up efudex)At some point I will rewrite the Easy way post to make it clearer.  I am about done with this whole routine but will stick around to help others as much as I can.   Jef1963 Sat, 09 Feb 2008 00:00:00 GMT dumb things - well I think we all do dumb things because we are trying to do the right thing.  Nothing wrong with being optimistic or hopeful.  But I may have done a really dumb thing too.  My doctor told me to use the Efudex on my cheeks, nose and forehead.  But I thought, why not do the whole face (chin)?  Maybe she missed something. Besides, she said that if there is no damage, the TX will not affect good skin.  Well the day after I started, the chin had two big areas of red that have gotten continually worse.  Far worse than any area on my face that I was supposed to treat. I have very sensitive skin, and I know that certain foods "seem" to bother it - NOT substaniated by any allergy tests - they can't find anything that shows an allergy or intolerance.   However, the night before I started the TX, I had a bowl of tomato soup in a restaurant.  It was highly concentrated soup - not the usual Campbell soup variety.  Nothing the next morning - so I just started the Efudex.  That night I had red spots in the same area that I sometimes get patches after eating certain things.  I did debate with myself and then decided that maybe those patches have always been related to sun damage - so I continued.  However, so far, none of the other areas of my face have gotten as bad - so now I think that I started the treatment on irritated skin - thus the dramatic response. I have stopped treating that area - I can always try that area again if I need to - but it is pretty bad.  I am putting Triple Antibiotic ointment on it and will call the the doctor if it doesn't improve this weekend.I have been reading a little bit about the Levulan and the photo treatment.  I would like to hear more about it from those who have tried it.Also folks refer to Efudex and Carac. One message stated that they used Efudex and later tried Carac.  Aren't they the same thing, just made by different companys?  However, the Carac company stated that you can use lotion after a few hours, whereas Valeant (efudex) says not to put anything on it.  All this can get so confusing.  Alwaysinthesun Sun, 10 Feb 2008 00:00:00 GMT Carac is a.005 solution while Efudex is a .05 (or 5%) solution of the active ingredient flouracil.They have different bases.Carac does state that the medicine is absorbed in 2 hours while you have to call Valeant's hotline where they would say 3 hours.Like in most things there are more gray areas than black and white with this treatment.Many different protocols for many different people with many different conditions and goals.   Jef1963 Sun, 10 Feb 2008 00:00:00 GMT  _______________________________________________________ "Carac is a.005 solution while Efudex is a .05 (or 5%) solution of the active ingredient flouracil."________________________________________________________Jef, the correct spelling is fluorouracil - for those who are learning about the drug's use and effects.  Again, these message boards are fine for good info on experiences and general suggestions, BUT, if you are about to begin a treatment with these very strong cancer drugs, this is CHEMO and you need to learn about it by researching along with consultations with your doctors.Here is another link with "basic" info on fluorouracil (Carac, Efudex, Fluoroplex):http://www.medicinenet.com/script/main/art.asp?articlekey=18 Whitey whitey1 Sun, 10 Feb 2008 00:00:00 GMT Also, Carac is 0.5% also in most topical treatments, Efudex the same, just brand names.  I used a generic and it was simply Fluorouracil  .5%, or 5-FU for short.  So don't know of any other difference.Whitey whitey1 Sun, 10 Feb 2008 00:00:00 GMT Thanks.  More info is always good.  I thought they were the same, but some folks were talking about it like they were two different drugs.  I am glad that you and Jeff have called it Chemo - because my doctor never mentioned that.  It is important for us to realize that it is a powerful treatment - not to be trivialized.   I just need to keep going - only on day 11 of 30 days. Alwaysinthesun Sun, 10 Feb 2008 00:00:00 GMT Always,The treatment (TX) can have many side effects (SX), but you and your doctor are the ones to discuss options and course of TX, not any discussion boards on the net.  Good luck, it will be over soon.Whitey whitey1 Sun, 10 Feb 2008 00:00:00 GMT Always, are you applying the Efudex twice daily?  How are you doing with it now?Whitey, how are your arms now?  SpankyB Sun, 10 Feb 2008 00:00:00 GMT Whitey,I have a call in to the doctor - and expect to hear from her tomorrow.  You made an excellent point - this group helps us know that we are not alone, but it does not take the place of competent medical advice!  I do look forward to touching base with you all! Alwaysinthesun Mon, 11 Feb 2008 00:00:00 GMT Spanky,I am on day 11, with 19 days to go.  I have a stinging burn on my chin and last night was the first time I had trouble sleeping. :-(   How is everything going with you? Always Alwaysinthesun Mon, 11 Feb 2008 00:00:00 GMT add on to last message!  Spanky I am using the treatment 2 times a day.  The other spots are not too bad right now - they just look unsightly - they are more in line with what I thought it would be - more lesion like.  similiar to the picture of the arm - I'm sorry, I can't remember whose arm that was! Alwaysinthesun Mon, 11 Feb 2008 00:00:00 GMT I am on day 3 of a 14 day (once a day) treatment. So far a little redness. BUT, I know the worst is still to come. Brian bfoley Mon, 11 Feb 2008 00:00:00 GMT Hang in  there Brian!  A lot of good support in this forum.  I knew next to nothing when I joined, and I certainly know more now.  The posts have lots of info - but as I have been importantly reminded, ask your doctor when you are unsure.Always Alwaysinthesun Mon, 11 Feb 2008 00:00:00 GMT Hello everyone!Well, I finished yesterday 14 days 5% Efudex twice daily.  Today I saw my dermatologist and his reaction was..."I'm so glad you did this".  He was also surprised at how red I was. He froze several areas and prescribed Triamcinalone (trye-am-SIN-oh-lone) to apply now 3-4 times a day to reduce itching, inflamation and redness.  It feels wonderful!!!  After two applications I can see and feel the difference.  I'm aiming to be ready to "face" the world by Saturday.My reaction to the Efudex was severe according to the doc.  I cannot imagine going longer than 14 days.  I almost quit on day 12 but managed to get through by giving myself a break that night and going back with it the next morning.By the way, Aquaphor got me through the last 2 days.  It's lighter than Vaseline and easier to wash off.  I used Cetaphil cleanser, Olay sensitive skin cleansing cloths alternately.  I'm glad I use the cloths at night because it help remove the dry, flaking skin so the Efudex could do it's job on the underlying skin.Good luck to you both...hang in there.  Everything you hear about nicer skin is true!!  I can see it already 1 day post treatment.I'm a very happy girl!!  SpankyB Mon, 11 Feb 2008 00:00:00 GMT My bad for spelling from memory.   I always spelled it properly in all previous posts. Jef1963 Mon, 11 Feb 2008 00:00:00 GMT Spanky  Thanks for asking.  Today is Tues Feb 12 and 16 days after ending 28 days of 5-FU 2/d on both arms and hands.  Again, the skin on the arms is MUCH different than face/scalp, but my arms "exploded" and I am very relieved to say that just today they are finally calming down.I actually saw my dermo this morning and he was impressed at the erosion extent, but said that all is good and many AKs should be eliminated and potential future cancers reduced greatly.  As Jef and others suggest, my doc also said a light coating of bacitracin followed by Aquaphor in the morning after showering was the best protocol during healing - after TX. 5-FU is very strong and everyone has different reactions. Some have serious side effects, so consult your doc if at all concerned.  Hang in there.Whitey whitey1 Tue, 12 Feb 2008 00:00:00 GMT Hello all, This is a good thread. I'm glad I found it!  I have a very light completion, blond, 7/8 Norwegian + 1/8 Danish ancestors. On day 14 of my treatment, and I am sooo happy to be at the end. It does scare me that 5-FU is considered Chemo.  I knew that, but reading it here reminds me again how powerful it is, and how careful you need to be not to get it near your eyes, or mouth.  My dermatologist didn't prepare me for how mental this would be. Time has slowed to a crawl.  for the last 5 days the pain is  not bad, at about a 7 out of 10, but sometimes climbing up to a 9/10, but it is constant pain and stinging, which is the mental part.  It is hard for me to sleep (I woke up and couldn't sleep at 2am so that is why the late post).  I can't wait to be not thinking about this.  Spanky, I too also almost quit on day 12, but forced myself to do the treatments yesterday, and today which is day 13. I just procrastinated the last treatment all the way to midnight. Only 2 more applications to go through tomorrow. I think I might have asked you this in another thread, but how are things going for you 20 days after treatment?  I am anxious to know.    I am also sure my dermo will be surprised at how red I am.  Amazingly red over most of my cheeks and nose, more than red, I would say deep red or maroon in some spots. My forehead is only 20% as red as my cheeks. That is because I always wore a baseball style hat most of my life when I was outside which covered my forehead (thank goodness for that).  The last 7 years I wore a hat with a wide brim that encirlces that hat and the brim is impervious to light, and I have been religious about applying lots of spf-30  or more sunscreen the last 10 years too. I rarely go without a shirt the last 20 years or more. I guess that was not enough.  Funny how my friends teased me about that wide-brimmed hat over the years (which I laughed with them, but never took it off), but no one has made fun of my red face when I go out the last week or so.  I am worried I am not peeling at all goinginto day 14. I called the dermo last week, and they said I would start peeling after the treatment ends. Right now my cheeks feel very tight, dry, stinging, and ready to crack and fall off.  I guess I will find out Monday if that is normal Wish me luck. aceace Sun, 02 Mar 2008 00:00:00 GMT