CancerCompass message board discussion started by Alwaysinthesun on 2/13/2008 http://www.cancercompass.com/message-board/message/all,20917,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi guys,Change in plan.  I wimped out :-(I am on day 13 of 30 days of Efudex 2x/day.  Treating cheeks, nose and forehead.  I have over 50 red  spots all over my face.  After seeing the pictures of how red and raw it could become, I called my Dr and asked her about it.  She talked to me for about 10 minutes on the phone.  She said that it would probably get very red and raw across the whole face - we had not expected that much sun damage.  I told her that I would have done the TX in stages if I had been aware of the level of impact - and that I can not have my entire face like a piece of raw meat.  We are now changing the plan!  I am going to continue treating the forehead, and  stop the cheeks and nose.  Later I will start the phototherapy which she thinks might take 2-3 treatments. The impact is less severe - a red face, like a sunburn for about a week.  She thinks that the two weeks on Efudex will have accomplished some level of treatment, so that the phototherapy will just complete the job - hopefully.  So I am continuing the Efudex, but not completely.  We shall see how it all works. Has anyone done the phototherapy? Any thoughts or advice?You all have been an imense support to me - I will still be here and rely on you!  Always in the Sun  or should I say Was always in the sun! Alwaysinthesun Wed, 13 Feb 2008 00:00:00 GMT You've done well, always.  Twice a day with Efudex on the entire face for 30 is extreme.  Your dermatologist can determine what exactly they are dealing with after 14 days.  My derm used a light over my face on day 15 and could see everything.  I cannot imagine what a persons skin would be like after 30 days as I barely made it through 14.Is your dermatologist going to see you soon to evaluate your skin?  SpankyB Wed, 13 Feb 2008 00:00:00 GMT Thanks for the encouragement Spanky.  I really felt bad about this decision, but I think it is the right one for me.  I won't see the doctor until after the 30 days are up on my forehead. If I get that far.  I am going to treat the cheeks and nose with Westport to help clear that up.  When I see her, she will evaluate when I can start the phototherapy - but I am guessing that I might have to wait until the forehead heals.  I am going to use this time to research the phototherapy.  Who knows, I may go back to EFudex on the cheeks and nose if the photo doesn't work - but at least I will only do one section at a time.How are you doing with the healing?  I am happy that the treatment is over for you, and that the best is yet to come!Always Alwaysinthesun Wed, 13 Feb 2008 00:00:00 GMT Always...you never know, maybe you won't have to do anything more with your cheeks, nose and chin after your dermatologist exams you.  I'll cross my fingers and say a little prayer for you.Good luck with the healing.  I'm 3 days post now and it still is prickly and burns in a couple of areas although it's diminishing slowly. The red has faded into a slight pink, and the new skin is baby soft.  Almost too soft as I can tell it's going to be very sensitive for a while.  Can't imagine using any make-up.  Actually right now I can't imagine using my regular cleanser or moisturizers.  ouch...  I think you did the right thing so don't feel badly about it.  I've been reading about the photo therapy and would consider trying it myself if the derm every determines it's necessary to do something.  Please be certain to let us know if you end up doing the phototherapy!!  SpankyB Wed, 13 Feb 2008 00:00:00 GMT Spanky,  Looking over past posts I see that you almost gave up on day 12.  So this is day 13 for me - it must be sort of a crisis point- you make it or you don't.  But I am not completely giving up - just going to fight this battle in sections.  I will certainly let everyone know how the phototherapy goes when I start it.  Always......D Alwaysinthesun Wed, 13 Feb 2008 00:00:00 GMT     I'm on day 7 of 14. I apply Carac at night only. I am treating my cheeks and nose, as this is where I've had 3 surgeries (Moh's) in the past year to remove 2 small BCC's and 1 small SCC. My right cheek is raw and slightly peeling (and hurts a little), my left cheek is very red but not as bad as my right. My nose has very little redness.     My father-in-law recently had about 8 ak's removed and was told he should do PDT on his entire face/forehead. IHe will be getting this done sometime in May. I will be interested in seeing what his results are, as I am very interested in this type of treatment. When I asked my dermatologist if he performs it, he said very rarely, as they almost always recommend Carac because it works so well. I recently read an article (which I am looking for) that said that one session of PDT is as effective as one 14 day course of Carac. I'll try to find the article and provide a link.     Let us know how your treatments are going. Best wishes.Brian bfoley Sat, 16 Feb 2008 00:00:00 GMT Brian,Thanks for the info on the phototherapy.  I am going to continue to research this before I start - unlike how I started the current treatment. It seems as though the effects of the treatment vary from individual to individual. And as you are discovering, the effect is not always consistent for the individual either.  I wonder if there is a correlation to the amount or type of sun damage with the effect of the treatment on the skin.  I am on day 17 - but only treating my forehead now.  I have not gotten the big patches of peeling skin - but there are lesion-like spots.  There area that I stopped treating is fading somewhat - and the doctor feels that it was still valuable to have treated it for two weeks.Good luck with your treatment and healing!Let us know how you do!Always in the sun - but more careful in the future! Alwaysinthesun Sun, 17 Feb 2008 00:00:00 GMT Brian-I am 35 year old female-There is a hx of melanoma in my family. Two of my sisters had melanoma removed from their bodies in early 30's. We are all very fair -first generation German/Swiss decent-blonde/blue-anyways have been a distance runner since age of 13 and never wore sun screen-also did the tanning booth thing every early springtime and loved the whole beach bunny look -not so glamourous now.  My forehead has a couple reddish spots about 12 in total looks like a mild wind burn-my left cheek is bright blotchy red/white patchy looking and my right side looks BAD BAD BAD-my nose looks like a surfers red red red.  Anyways it looks like my eye bones have the worst sun damage.  I woke up this morning and my right eye is swollen-LOVELY.  I am getting a little depressed at this halfway point because I m hibernating-I only run about 6 miles a week instead of 18-30 because  I live in the North East- Mid Hudson Valley and have to run with a scarfy thin wrapped up to and over my nose-so between not getting adequate breath and the discomfort/shifting of the scarf my runs basically STINK.  I keep on going out cuz if I don't I would be in a real bad place-Anways  why did your Dr. only prescribe 14 days-I am afraid that if I stop now the dark brown/black freckle spots wont fall off and I will be stuck with them on my face.  Please respond back ( I sound desperate) I need lots of emotional support right now. luvlivin Sun, 17 Feb 2008 00:00:00 GMT luvlivin...don't worry.  The brown/freckle like spots will go away.I did 14 days twice daily with Efudex 5%.  On my 7th day post treatment today.  Remember dosage and treatments are different so when you compare here...take note of this fact.My "brown freckle" spots appeared on day 12 of tx...I was worried like you.  But they literally washed away.  Peeled right off.I didn't have any large "erosions".  Just red all over with some blotches.  Like you, I'm an outdoor person and it killed me to limit my routines.  You'll get through this...just be patient.I'm just waiting for the "redness" to subside.  Otherwise all trace of treatment is gone and my skin feels great!!(female 45...not male like my icon suggests) :)) SpankyB Sun, 17 Feb 2008 00:00:00 GMT luvlivin,      I too live in the Northeast (Suffolk County, LI). I was concerned about the 14 day treatment until yesterday (day 9). I'm starting to see 2 brown-like spots under the redness on my right cheek, so I assume this is an AK. I was also concerned because my nose was not getting as red as my cheeks. However, as of yesterday, it seems to have caught up.    Also, last night was the first time I had to use a washcloth to help remove the dead skin on my cheeks/nose. I soaked a washcloth in warm water, and then put it on my face for a minute to loosen up the dead skin, and then sort of rubbed it off with the washcloth. It did this 3 times last night and it hurt like heck. After I dried my skin I waited about 10 minutes to make sure it dried, then I put the Carac on and it helped sooth the burning I had. A couple of hours later I applied Cetaphil and that made the skin feel even better.    One thing that has me concerned is that my dermatologist didn't say anything about me coming to the office in the week or so post treatment. He said come back in May, and he'll do a full body check. I think I'm going to schedule a visit sometime next week (I finish my treatment on Friday). I'm also thinking about switching dermatologists.    It is tough for me as I am a Software Engineer and have many meetings throughout the week, and I am very self-conscious about the way I look right now. I've accumulated enough sick time so that I can take time off, but I really don't want to. When I tell people that I'm on a topical chemotherapy treatment, they do seem to understand though.     Sorry for the long winded post. Hang in there, and keep posting here. I found that it definitely helps to talk to people who are going through the same thing as me.Brian     bfoley Mon, 18 Feb 2008 00:00:00 GMT Hi SpankyB thanx for the reply-I am noticing that there are several aras on my face that are in the erosion stage-black freckled skin fell of and cracked- I have dc'd application in these areas.  My lower jawline is at the brownish faze so I keepon applying and my forehead is the slowest to respond but I do have at least 11 visible ak's just getting pink up there.   To me it looks like I wil have to complete the total of 28 applications-even if only spot treating in some areas.  QUESTION- I dc treatment on 2/28 will this be a long enough time to heal so I look presentable at a family gathering to pay respect to my dad who passed away last year from Lymhoma-I kinda don't want to look ghastly and take the focus off the memorial.  Be well and thank-I hope the worst is halway over luvlivin Tue, 19 Feb 2008 00:00:00 GMT Hey Brian-Small world I completed my master's at adelphi university which I believe is in your neck of the woods.  I still wonder why your doctor prescribed 14 days of carac applied 1x a day-mine prescribed 28 applications 1x a day mmmmmmm.  Anyways -I hate this stuff -I have been running roughly 40 minutes a day instead of 70 minutes and feel a little drained cuz I am less active-I eat more outa comfort which I don;t really care that much about-but it's more comfort food-I usually eat pretty clean ...another uuuggghh-I am gonna cut myself some slack right now cuz it is 3 a.m. and I have stomach cramps from the weird combination ofjunk food I consumed in the past24 hours.  Keep on chattin with me really helps me stay me lol heather luvlivin Tue, 19 Feb 2008 00:00:00 GMT Luvlivin...my condolences to you on the loss of your father.When is the memorial service?  I'm on day 9 of healing and if I had to cover the pink with make-up I could for a day.  My skin is healed but slightly pink with just a bit of flakiness.  Nothing major.  SpankyB Tue, 19 Feb 2008 00:00:00 GMT luvlivin,     I graduated from Hofstra, just around the corner from Adelphi. I too am concerned about using Carac for only 14 days and I go back in sometime next week, I'm going to ask. Although, at day 10, it must be working because another "brown" spot just fell off today. I assume that this was another AK falling off.      I stopped going to the gym out of embarrassment over my red face. It's just as well because I feel like I am more tired since I started this therapy.     It's easy to get down about this stuff. The week before I started treatment I was a bear to be around, and I found it very hard to sleep. What helped me was knowing that it's only February, and both my kids are not currently active in their sports, so I didn't have to risk missing any games. Spring is just around the corner, and you'll be glad you did this now (I know I certainly will).    I am also going to do more research on Photodynamic Therapy. This seems like a viable alternative in case I have to go thru this again sometime in the future.  Brian bfoley Tue, 19 Feb 2008 00:00:00 GMT Hey spankyb and Brian-rough day I felt the crawling sensation non stop-  My face is pretty much leathery all over now-open sores in some spots-and am emotionally exhausyed from this stuff.  Spankyb the family gathering is 3/9 I hope I can get my hair touched up before then.  Brian I feel like crap right now-I dunno I thunk I may throw in the towel this saturday-that would give me 23 outa 28 days completed-I have an active 22 month old -my momma in law is here for the next 6 days to help me out cuz my husband is a work addict and no he is not having an affair haa haa lol he is an immigrant from Kawait and has the mentality of a workhorse-This treatment is really scary...would you think I could dc in the areas that are cracked and leathery and forge on with my forehead and nose that are bright and blotchy red?  My PA isn't very supportive-she felt it was "unnecassary" another derm wrote the script in her same practice-Well obviously I needed  this carac stuff cuz I sure as heck responded to it-I totally look forward to hearing from you guys-help me put things into perspective so I don't feel so alone and isolated in my big house on the hill-smiles OUCH Heather luvlivin Tue, 19 Feb 2008 00:00:00 GMT luvlivin-- I was also prescribed Carac for 28 days, but stopped at 23 since I felt that based on my skin condition (which sounds very close to yours) the medicine had done its job.  I did not consult with my demotologist on this, but based it on my own research and sense that another 5 days would not provide additional benefit.  I first saw my demotologist two weeks after concluding treatment (per her initial instruction) and she indicated the treatment had been a success and all the AK's had been eliminated.Much like you, I had some areas of the skin that were quite leathery with some cracks developing.  Other areas, including my nose, were bright red, but the texture was not as leathery.  Interestingly enough, I knew I had some AK's on my nose and was wondering why the skin didn't become as leathery as other parts of my face.  However upon healing, all of the AK's were gone.You may want to have a dermotologist take a look at your current condition.  From what I can tell, people react differently and while the initial prescription is generally for a set period of days, the timing and nature of how your skin reacts to the medicine may require more or less time than prescribed. You should look decent around one week after you stop treatment (won't notice much change for the first few days however) and probably look quite good after two weeks.  I can say that the treatment does leave your skin very soft and smooth. I am a 54 year old male (despite the female icon on my member indicator) so was doing this for health vs. cosmetic reasons, but the way your skin looks and feels is a major side benefit.Also, I have had a number of AK's frozen in the past, however this was nowhere near as effective as the Carac--you can definitely feel that the rough, scaly patches of the AK's are all gone.  While you feel bad right now, I am sure you will be very happy with the results once this is over. NashDad Wed, 20 Feb 2008 00:00:00 GMT