Lots of little things I'm learning aren't on the FAQ, which I received from the Dr AFTER I'd called 6-8 times with questions and had a meltdown.....THEN they said...duh....would you like me to send you our FAQ? Sure.....now that I've been on the stuff a few days! (grrrrrrrr)
First off, it helps to remember that you, the patient, is ultimately responsible for what's going on. Helps to remember this is a choice and you're doing this to be better in the long run. Also, keep in mind, you can go to the doctor ANYTIME during your treatment. I would've probably gone the Friday before I was scheduled to stop on Monday if my car hadn't been in the shop that day. Just realize, doctors really are there to help and support you, but they can't do that if they don't see or hear from you until you're mad at them. That really doesn't help you get better faster and that's what all of us want. How fast can I feel better?!?!
1. Supplies - I stocked up on everything (groceries, etc.) thinking I would be uncomfortable in public. So far, not a concern. Didn't feel all that awkward in public til about Day 14. Still went to work every day and still went grocery shopping, but I did feel most awkward at probably Days18-25.
2. Application - My dose was 2x/day/21 days - I had about half tube left after. I think I applied fairly generously, but I made sure it wasn't so much that it didn't "disappear" after a minute or so. If the cream still shows, I think I've got too much. FAQ's say Dr. will advise, but mine didn't and I just had to wing it. Trying to use the eye socket as the "border" around my eyes and for sure not getting on lips.
3. Drying - Before Applying - After asking, I was told to wait about 10 minutes after washing face to apply. In the morning, I'm short on time, so I started turning my hair dryer on "cool" and low and holding at arm's length to help dry my face & hairline a little faster. (so I could start the hour-long drying AFTER applying!) After about Day9, the towel is uncomfortably abrasive, so I do a little patting, then the hair dryer on cool/low again. Works well for me!
4. Drying - After Applying Told to plan about an hour to dry after applying. For me, it still feels a little sticky/tacky, but I'm going to sleep anyway! After I started seeing the reaction, I changed things around to shower & have at least 2hrs before needing to go to sleep.
5. Sleeping - My treatment was on my face, so I asked about ruining my pillowcases with this stuff and got a very vague "I don't know" so I bought 2pr of cheap pillowcases to protect my pillowcases from this stuff. Nurse said if open sores do come about, consider changing to clean pillowcase(s) each night. Makes sense. Ok, not a concern til the last week, then I was glad of the cheap cases because I was leaving residue behind. During my healing, I had to sleep on my back, mostly because of pain, but also because (sorry) my gooey wounds would stick to the pillowcase.
6. Skin Products - My FAQ's say don't use any makeup, moisturizer, etc., but Dr. says it shouldn't hurt efficacy of the product. Confuses me, so I didn't wear any the first week, but when it became pretty noticeable, I did start using make-up or a tinted moisturizer. Not really for my own comfort but for the peace of mind of others around me. Could wear "some" 2nd week, but 3rd week, nope. Especially the last 4-5 days I didn't want anything touching that didn'thave to.
7. Sunscreen - FAQs say Dr. will recommend, but mine didn't. I bought some Neutrogena Sport Spray and afterwards Dr. says that's fine. BUT, a buddy/Nurse Practioner told me "no." Don't use chemical sunscreen (like Neutrogena) but use the "block" kind that contains Zinc Oxide and Titanium Dioxide like Skinceuticals. If the Neutrogena burns Saturday (cuz there's also alcohol in it), I've got the Skinceutical on my bike.
7a Sunscreen - Well both sunscreens hurt, but the Neutrogena Sport Spray definitely hurt more, though it turns out that's what my Dr. recommends. So, my compromise was to use up the Skinceutical samples, then I bought the Neutrogena Sport Face Lotion. Small enough to carry on my bike and it's 70SPF. (But I didn't ride after this ride until I was pretty close to healed)
8. Exercise - After the first week, sweat was stinging! Still planning to ride my bike, but just nice to be prepared for it. Figure the Skinceutical sunscreen might feel better the last couple of weeks because of the super-sensitivity. Turned out, working out inside got too painful. When my body temp went up, felt like I had acid on my face, so I gave up and just didn't! Rides outside (2 wknds) were tolerable because of the chilly weather. Wouldn't have tried any riding if it was warm, but this was fine. Had to skip 2 wknds for healing because my face was raw and the steroid would backfire on me in sun, so I just didn't ride)
9. Pain - (Day10) So far just some discomfort, not pain. I've had no thoughts of quitting the treatment early. I'm told lots quit or need to take aspirin or other pain meds (but, I'm a long distance cyclist and we're just dumb enough to keep going til whatever it is, is over. :) That applies to this too - I ain't quitting) So far, the best comparison is a painful sunburn, but it lasts longer than a couple days! The first annoying pain was the creases on my nose. Ouch! Sucks that blowing my nose hurts. After 8 days, couldn't use a washcloth to rinse my face. Basically, anything but my fingers is too annoying/painful. Taking 2 aspirin before bed is helping me get to sleep. Cold water washcloth feels good, but an ice pack was too much! 3rd week, I took aspirin to sleep and again after my bike rides. Learned afterwards, I might have been a candidate to use the steroid ointment AND the Efudex. Still, I'm glad I didn't. Personally, I didn't want ANYTHING on my face that my decrease any efficacy whatsover. Plus...whatever I put on, I have to take off again before I can apply the Efudex, so I reallly don't want to add to any cleansing needed! Glad I didn't do anything but some aspirin.
For me, pain was worse the last 3 or 4 days of treatment and then after, because then the skin was sloughing off leaving open wounds. That was the most painful part...for about 10days or so after stopping treatment.
10. Another posting: Found another posting with this young woman documenting her efudex experience and this one is NOT 4yrs old! http://www.hybriddesign.net/efudex/index.shtml
11. Day after - Saw my Dr. morning after my last treatment to learn my reaction was overly severe. I'm actually OK with that so long as it killed as many cancers as possible! Dr. prescribed a steroid ointment and (no kidding) I felt noticeable relief in an hour!! Initial plan is to do the steroid ointment each morning (hopefully no makeup this week, but vanity may win out?) and Aquaphor at night to help moisturize. Dr. also said plain ol' Vaseline could be sub'd for Aquaphor, but I already have Aquaphor, so that's my "A" plan.
12. Steroid Ointment - I would absolutely ask in advance for the steroid ointment to use after stopping Efudex. I noticed a dramatic decrease in pain in 1 hour!! Mine is Triamcinolone Acetonide. My Dr. is hoping I can wean myself off the steroid ointment after 7days, but so far it's the only thing helping with the pain at all. Started mixing it with antibiotic ointment (Mupirocin) at 5days to try and start weaning.
13. Nutrition - Since I can't work out during this, I've found I'm actually not quite as hungry, so have tried to do some things to help me from the inside out. I suck at eating healthily "all the time" and when I've had pity-moments during this, I've pretty much let myself have whatever I want....like when my face was so swollen I couldn't eat easily, I decided PopTarts sounded good! Then I discovered spinach smoothies. I love raw spinach and now each morning I'm making a smoothie with 1/2 fruit (papaya, bananas,cantelope,berries, pineapple, whatever), whey protein powder and 1/2 raw spinach. Lov'in it!
- I've also added Garden of Life's Perfect Food to my daily diet. It's a super-concentrated pro-biotic greens and I know I need more greens. Lady at the health food store really stressed it when I was there.
- Taking 3 doses of my B-complex each day and 2grams of Vitamin C each time too to help boost my immune system
- Added SAM-e to my supplement regime too.
14. Cleansing - Was initially cleansing 2x/day with Kiehl's Cleaning Milk and gentle washcloth. When that became too painful, just 1x each morning. Then I switched to Aveeno Ultra-Calming Foaming Cleanser and the little baby washcloths. Does hurt a little less and I'll never know if it would've hurt less anyway, since I've been of the treatment for a week.
15. Surgery Notes - Thinking day surgeries would be no big deal, I still went under general anaesthesia. WISH I had stocked up on 7-up, crackers and soup!
