Lessons learned and tips on using Efudex or Carac

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RE: Lessons learned and tips on using Efudex or Carac

by Amber77 on Fri Feb 08, 2019 04:11 AM

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Yes I am in the US. I was working with the nurse to get authorization but I think I will call the insurance company directly tomorrow while I wait to get back from the nurse. I have 4 spots and 2 others that have just come up in the past 2 days. I would like to get started as soon as possible because I was planning on a vacation and would just like to get all of this over with. I really appreciate you answering my questions. This was the first dermatologist visit and he only told me that the cream would hurt and my face would look worse before it got better. I'm so glad I did some research beforehand! I'll keep you updated on the progress! Amber

RE: Lessons learned and tips on using Efudex or Carac

by redintheface on Fri Feb 08, 2019 04:14 AM

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Welcome to CancerCompass. Fluorouracil (less expensive, but still expensive) is the generic for Efudex. Both are equally effective. I've gone through this treatment many times using both at different times. I've had to use both on my entire face as well as ears. Nothing has ever shown on my ears. Are you male and is it on your left ear? The reason I ask is men are more likely to get it on their ears (due to short hair) and the left side is where it's usually the worst, due to driving in cars. If you have it on your ear I wonder why your doctor isn't having you treat your face too as it doesn't have to be seen to be there. As I advise anyone when you begin treatment stay out of the sun as the sun increases the effect of the cream. You don't want that. Reaction time all depends on your skin, but you might go a week without noticing anything. The second week you'll probably start seeing redness in your skin, like a sunburn. This cream only effects the actinic keratosis and pre cancer, it doesn't effect healthy skin.  Don't let any of cream accumulate in the creases of your ear, rub it in well. You can do a Google search "images of Efudex treatments" and you'll see varying degrees of treatment. Some of them are quite scary looking, but in the end you'll have new healthy skin.

Good luck to you.

RE: Lessons learned and tips on using Efudex or Carac

by RealMckoy on Fri Feb 08, 2019 04:15 AM

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On Feb 08, 2019 2:36 AM Amber77 wrote:

Thank you so much for all the information and support. Still haven't heard anything from my dermatologist about wether the medicine will be covered. Any recommendations if it's not? The pharmacy said it's $900 if I pay it out of pocket, which I don't have at the moment. I tried the online discount cards and the pharmacy said it's $1300 with the discount card. I don't understand why insurance wouldn't cover it since it's a rather common medical diagnosis. I just turned 41 so my guess is this may be something I have to more than once. I have sun damage from when I was a child but I don't do tanning beds or sun bathe because of my fair skin and red hair. Also my doctor wants me to spot treat only the spots that he found in the office. I'm wondering how common it is for the medicine to bring other spots up to the surface? I'd almost rather do the whole face if this saves me from having to do this anytime in the near future. Amber

Have you tried to order it online from Canada?

In my case it definitely brought up significantly more spots than what the Dr was concerned about. I did my forehead, side of face and nose and it lit up like a Christmas tree. Didn't have any significant pain to be honest. I will def do it again for the lower part of my face given how my upper face reacted.

If you react badly on the cream, use Cortizone ointment, not cream. Reduces the dermatitis and soothes the skin. Just remove before next application using mild cleanser and soft microfibre cloth.

From my research a lot of people go through hell because they read not to use anything but the medication.Treat the symptoms which is the dermatitis reaction. It does not reduce the effectiveness of the drug

Suggest you find an experienced Pharmicist who has seen a lot of people on this drug at every stage. Mine was far more helpful in telling me when I could stop than the Dr.

Good luck!

RE: Lessons learned and tips on using Efudex or Carac

by redintheface on Fri Feb 08, 2019 04:30 AM

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I've never known/heard of a nurse getting authorization for medications. I learn something new every day. It's sad, but true doctors don't give much information about this treatment and then you're kinda on your own from there. It seems everyone is treated for 4 weeks then at the erosion stage you're finished. Well, finished applying the cream, but you're not finished you have to heal. If you've read many stories here you probably know how you're going to look and that it takes time to heal. You need sufficient time to heal before you will be back to your normal self. The redness/healing skin takes a long time to go away. Depending on where you're going for vacation you'll need to take that into consideration too. I'd ask him if you could treat your whole face especially since two more have popped up. More than likely more are waiting their turn to emerge.

Best wishes to you

RE: Lessons learned and tips on using Efudex or Carac

by redintheface on Fri Feb 08, 2019 04:52 AM

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Amber, Another thought, the nurse you're working with has numerous patients to work with so you're in line somewhere waiting your turn. You have one person to worry about, you.

Be your own advocate and call your insurance company first thing in the morning directly. Tell them how urgent this is, more spots have popped up and delaying treatment increases your risk of it turning to cancer which will be more costly to everyone. Put on your boxing gloves and get ready to fight. I think this cream only comes in one size, 40g, about half the size of a tooth paste tube. In case it comes smaller and your doctor ordered a smaller tube if you're wanting to do your whole face you'll need to consult with the doctor/nurse to see if he will prescribe the 40g size tube.

Good luck

RE: Lessons learned and tips on using Efudex or Carac

by Amber77 on Fri Feb 08, 2019 05:06 AM

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Yes I'm calling first thing in the morning! It's been a week and I would like to start the treatment this weekend. I'm going to stock up on some other things I may need. I'm single with no family nearby so I'm hoping to get everything I need as I've been reading through the messages and have been taking notes on things that have helped other people. Trying to figure out something to keep me busy for when I'm off work. Pretty sure I'll go crazy being off that long with nothing to do, even if I'm not feeling well. I'm really hoping it's not as bad as most have said it is but I think I'm mentally prepared for what to expect.

RE: Lessons learned and tips on using Efudex or Carac

by redintheface on Fri Feb 08, 2019 05:24 AM

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You probably don't need to take off work until about 7-10 days in, but you never know. Some people have done things with doctor's advice and without so be cautious with what you do. The biggest problem is going out if you need to get something at the store once your face starts looking bad. If it's safe go at night or early morning when not too many people are around to see you. If you're into reading books, a crafter or whatever stock up. I used to ride my bike at night and if someone drove past I just looked the other way. Being off work might be the time to do some spring cleaning. Have friends come over for a movie. Do paperwork at home. Catch up on missed TV programs. Lots of things to do. You'll be fine............

RE: Lessons learned and tips on using Efudex or Carac

by Amber77 on Fri Feb 08, 2019 03:15 PM

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Yes I'm calling first thing in the morning! It's been a week and I would like to start the treatment this weekend. I'm going to stock up on some other things I may need. I'm single with no family nearby so I'm hoping to get everything I need as I've been reading through the messages and have been taking notes on things that have helped other people. Trying to figure out something to keep me busy for when I'm off work. Pretty sure I'll go crazy being off that long with nothing to do, even if I'm not feeling well. I'm really hoping it's not as bad as most have said it is but I think I'm mentally prepared for what to expect.

RE: Lessons learned and tips on using Efudex or Carac

by Amber77 on Sat Feb 09, 2019 03:09 PM

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So I called the insurance company and the doctor today. I have been approved for Carac finally! Went to the pharmacy and they do not have it in stock so know I have to wait for it to be ordered. I should be able to pick it up by Tuesday or Wednesday. I guess that gives me a few days to pick up some books to read and pull out some crafts. I have some friends that have volunteered to make time to the store if I need anything once I get to that point. I'm just ready to get this started and over with.

RE: Lessons learned and tips on using Efudex or Carac

by redintheface on Sat Feb 09, 2019 06:16 PM

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Congratulations on getting approval! Since this is your first time using it you have no idea how you're going to react to the cream. Your's might be the same as others, less, or more, but in the end you're going to be fine and be happy you did it as is everyone. When I picked up mine no matter time I always waited until the next morning to begin treatment that way it had all day to work, then at night wash off, wait 10 minutes, then reapply again. I'd usually call night around 5:00 PM that way it had hours to be on my skin untouched by pillows which does cause it to rub off. If you have cats or dogs do not let them lick your face as this medicine is deadly to them. This medicine is also for dangerous for babies. Don't share towels with anyone either and change them often. Same for your pillow cases, I doubled my cases to keep it off the pillow. I didn't put on my bedspread the whole time I treated being it would have been in contact with sheets and I would have had to have it cleaned. After treatment I also washed all blankets. I haven't read anyone doing this, but it's better to be safe than sorry. Don't stress you're going to be fine.

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