CancerCompass message board discussion started by geeknee on 9/9/2007 http://www.cancercompass.com/message-board/message/all,16016,0.htm Fri, 29 Aug 2008 00:00:00 GMT Fri, 29 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/  I am covered (arms, hands and legs) with solar keratosis. My Dr. has prescribed Efudex cream for a month followed by Intense Pulsed Light Therapy. I was given no info about this medication but I have been reading about it online and now am very concerned about using it. In all that I have read however, I have yet to find anyone who has used this on their legs. Has anyone had this treatment and do you know if it can be used on both arms, hands and legs all at once? I am really nervous about starting and wondering when I will be back to normal again. We also spend 3 months a year in Florida beginning around Jan 20. My Dr. seems to think I have plenty of time to do the Efudex then at least a couple of the light treatments (side effects look almost as bad!) and be fine by the time we leave. Any feedback would be greatly appreciated! Thanks geeknee Sun, 09 Sep 2007 00:00:00 GMT I also have keratosis all over, arms, legs, hands, chest. I am on day 24 of my first round, whcih is my chest and shoulders. Wehn I am done there I plan to do my upper arm, then my lower arms, and then the tops of my thighs. I have been doing my hands with my chest/shoulders. My hands are not showing much if any reastion, but my chest and shoulders are seriously on fire. Like the rest, I can't sleep, and every movement I make start the burning all over again.But I will keep up with it, because the AKs were getting so numerous and ugly. I am 41 and have tried the laser lights, freezing, etc. This is actually my second chest treatment, I quit the first time (five years ago) after 7 days because of the pain. But I will stick it out this time. meljw Mon, 10 Sep 2007 00:00:00 GMT Me again - I decided to do mine in pieces because the pain in so intense. I plan to take 2-4 weeks between each area, so they have time to heal. This will take all winter, but I am hoping for pretty skin again by spring. And yes, I will have it sun blocked to the max. I meljw Mon, 10 Sep 2007 00:00:00 GMT  On 9/10/2007 meljw wrote:I also have keratosis all over, arms, legs, hands, chest. I am on day 24 of my first round, whcih is my chest and shoulders. Wehn I am done there I plan to do my upper arm, then my lower arms, and then the tops of my thighs. I have been doing my hands with my chest/shoulders. My hands are not showing much if any reastion, but my chest and shoulders are seriously on fire. Like the rest, I can't sleep, and every movement I make start the burning all over again.But I will keep up with it, because the AKs were getting so numerous and ugly. I am 41 and have tried the laser lights, freezing, etc. This is actually my second chest treatment, I quit the first time (five years ago) after 7 days because of the pain. But I will stick it out this time.  Thanks for the response.  Did you Dr tell you to do the treatments in small segments (1.chest 2. upper arms 3. lower arms...etc.) or is it just the way you decided to do it? I am supposed to be using it on my entire legs (excluding my knees and the very top of my thighs) and my hands all at the same time. I am really getting nervous about this! I had no idea when she told me to use this that it would have this kind of side effect. She mentioned "some redness and maybe some inflammation" I figured I could handle that easy enough! I am 54 and have been a sun worshiper all  of my life. As a teenager I used to go out on the beach from morning until late afternoon and slather up with baby oil and iodine....really scorched myself! I have never felt comfortable in my skin w/o a tan and now my skin is such a mess! I not only have large brown spots everywhere but I also have lots of bright red spots (these are new and multiplying) and some raised lesions as well. I hope that you have gone through the worst of this and that you will be happy with the outcome. Thanks again for the response. , excluding my knees geeknee Mon, 10 Sep 2007 00:00:00 GMT Thanks again and Good luck! I hope that it all turns out well for you. I am supposed to start mine soon but I wanted to talk to the Dr first and get a little more info from her before I do. Has the pain been this bad throughout the entire treatment or just the last few days? Are you able to carry on an "almost normal" life? I will probably have to end up doing most of my body!   geeknee Mon, 10 Sep 2007 00:00:00 GMT No my doc didn't suggest doing the treatments in steps. I just started in the late summer (Aug) and only wanted to do areas that could be covered by a short sleeve shirt with a somewhat high meckline. So I started with my chest and shoulders. I figure about the time this is done and healed it will be long sleeve weather and I can start on my arms. It just hurts so much that I think I can only do a small area at a time. As for living a normal life - I have gone to work every day. It is not easy, but I get through it. Usually by the time the work day is done I am in agony from the clothes, the seams are torture. I come right home and put on a huge soft t-shirt inside out for the rest of the night. My doctor gave me Hydroxine for the itch. He said to take up to four at bedtime to help with sleep, but I confess I take two as soon as I get home with a big glass of wine, and another two at bedtime. My husband and daughter are bearing with my irritability and sluggishness okay. I know they will be ready for a break. meljw Thu, 13 Sep 2007 00:00:00 GMT The pain has been pretty intense starting about the 5th day. Week three was unbearable. In week four the pain is bad, but the itching is horrid!! And the worst part is that when I scratch, it burns so bad - but I can't help it. It seems like if I can just leave it alone for awhile, it settles down. But it is hard because it itches soooo bad. I describe it as feeling like having peeled a sumburn too soon and then having cactus needles stuck all in there - X10. This is not the worst pain I have felt, but definately the most constant and long lasting pain. It is exhausting.  meljw Thu, 13 Sep 2007 00:00:00 GMT Wide field irradiation would be more effective and in the areas treated there would almost never be another keratosis.  Over time all major areas can be covered. (there is a limit to how much can be done at one time) Witchdoctor Sun, 23 Sep 2007 00:00:00 GMT HI thereI was diagnosed with ALL PH+ on Oct 16th 2003, Had a allogeneic stem cell transplant On march 23 2004.  I am still on some anti-rejection meds as well as a plethera of others, but the GVHD is under control, using photophoresis. So to be abit on the proactive side and after having 3 surgery's for SCC in the last year my derm decided to go the 5FU route.  I am now on day 22 and am really miserable, I started putting the efudex on 2 times daily on just the AK's and the surgery sites, but that has changed as the surrounding areas showed activity.  In that case the doc wanted me to put it there, and after a week well there was alot to cover day and night.  I am glad for the forum as I see that I am experiencing the norm.  The dryness and stinging I thought was just part of the process and my doc doesnt even want to see me till after the 6 wk process.  It is hard to believe that this is all good when it hurts so much.  He did not say to use any vaseline, aguaphor or eucerin cream, but I see from the posts that it is commonly used after a 2hr waiting period and then to clean the area prior to an additional treatment.  I also dont get much sleep since I get woken up when turning and rubbing my face (sides) or neck on the pillow.. any thoughts here?  also does anyone's eyes burn at time and the eyelids itch?   I guess that is enough for now.. thanks luvtogolf Tue, 25 Sep 2007 00:00:00 GMT