Wanted: A Efudex Buddy

Butterflyswimmer - I hope your treatment is going well so far.   I will be starting my own Efudex 'experience' in about 3 weeks or so and I think it would be easier to go through it with someone so hopefully there will be someone that is in the process of doing it right now as well.   I would be happy to lend any support that I can as I  have researched the treatment on line extensively and definitely can see that it is not going to be an easy process.  Are you doing your face or some other area?   I would love to hear how you are doing along your Efudex journey.   Hope you are doing ok.  

I

On 12/5/2007 Potterylady wrote:

Butterflyswimmer - I hope your treatment is going well so far.   I will be starting my own Efudex 'experience' in about 3 weeks or so and I think it would be easier to go through it with someone so hopefully there will be someone that is in the process of doing it right now as well.   I would be happy to lend any support that I can as I  have researched the treatment on line extensively and definitely can see that it is not going to be an easy process.  Are you doing your face or some other area?   I would love to hear how you are doing along your Efudex journey.   Hope you are doing ok.  

 

I

Hi,Potterylady. 

I began using Efudex on my face only, on Tuesday morning, so I've gone through 4 1/2 days.  So far, the only thing I've noticed is the pre-cancerous area on my forehead seems to be healing.  On day three I noticed spider veins appearing on my cheeks, nose and around the corners of my mouth.  I called the PA that prescribed the Efudex and she said if you have Rosacea especially (I do) that will happen.  She said it should get better a couple of months after stopping treatment.  Also, I found this interesting....I told her on message boards I learned that people are putting it on their open sores as they go through treatment.  She said, if I get open sores (open, cracking or bleeding) to STOP treatment, if it is at the 2 week point or after.  She said treatment is normally 2-4 weeks, so stopping at that point would be fine.  She has me on it for 3 weeks.  I thought by now I'd see redness or swelling, etc.  Day 5 is tomorrow so I'm sure I won't be disappointed, oh dear!  

 I hope others join us for support on this journey and that we can be of help to others to follow.  Thanks for writing.

Hi Butterflyswimmer - was just checking in and hope that your treatment is going well (or at least that you are not too miserable).   I wanted to ask you (and others can chime in if they know) if your dermatologist said that you could use moisturizer or aloe while you were doing your efudex treatment.   I thought mine had said that they really did not want me to use anything other than the efudex for the 3 week time period and then after that was done, I could use moisturizer.   My skin is dry normally this time of year so I can't imagine how it will be if I don't put any moisturizer on....

I am still trying to decide when to start my own treatment - there is no good time but I think I will start around Christmas.   I am definitely getting nervous.

Hope everything is going ok and let me know how you are doing.

Hi Butterfly Swimmer-

I'd love to be your Efudex bud as I'm starting my Efudex treatment today and will continue for 4-6 weeks.  The messages on this site were very helpful to me this last week as I was waiting for my biopsy results.  I'm feeling really uncertain about all of this and althought I've got a great family and friends to help me through this, I will be secluding myself as much as possible and having someone else to correspond with who is going through the same thing would be great!

On 12/3/2007 ButterflySwimmer wrote:

Who Wants to Do Efudex Therapy Together on the Message Boards?  I'll be beginning tonight.  I'd like a Efudex Buddy to go through this together for support.  Those of you that have already been through this are more than welcome to join in with your experience.

Hi,

I started my treatment on November 29th twice a day for two weeks ending one week ago on December 14th. I treated my entire face. It has been one week since I stopped and I have not peeled and am still very red and spotty. I feel like if I could go back in time I would not do this. Maybe in a week or two I might feel different (I sure hope so).

How is your treatment progressing. How long are you using efudex? Twice a day? What areas are you using it on?

I hope all is going well for you. 

Hi Chicken Chick.

Today is my 17th day of twice a day Efudex.  

(First, I'll say that anyone not sure if they should start before Dec. 25th or not, the soonest that anyone I've read about has seen red spots starting up is day 3.  If it was me, I'd start the 23rd, unless you plan on going out for New Year's Eve.  Be sure and make your doctor, shopping, etc. appointments to be no later than the first week.

I didn't see anything noticeable to others until day 7 w/ 5 spots.

Day 8: 2 more spots + above upper lip & lost appetite, tired by noon.

Day 11: most of upper lip red, lost appetite  for short time in afternoon.

Day 12: 2 more spots on ose, other areas same

Day 13: about 26 (10 major) on forehead, nose worse & swollen

Day 14: some crussing starting on 7 spots & upper lip

Day 15: NOW RAW & stinging during washing, 6 new spots, 5 spots starting to crust on forehead & 3 on upper lip crusting

Day 17: Almost all spots/areas burning during washing, more redness, some tiny ant-feelings on some spots....that is healing happening.  First sign of getting better is area directly above and across upper lip is now less sensitive and a little tan w/ minor crusting.   More tiny spots in new areas, mostly on outside of cheeks.

I have been taking low-molecular weight hyleraronic acid (Injuv) and  taking extra Omega- 3's for about two weeks before starting so skin will have more moisture from the inside out.  I'm using a natural, gentle face wash.  I use a glove to wash my face and a soft sponge to dap my face clean.  I like it when I wash in the shower, it's not as harsh as the patting to rinse my face.  I let my face air-dry for one hour before I put my cream on.  I imagine 15 min. might be fine, I just want to make sure my pores are closed when I apply the Efudex.   Then, I put a drop or two of Emu Oil on a  Q-tip and dap it in the creases of my nose and corners of mouth so as not to get the Efudex in there.  Just put a touch on or it will spread with the face heat.

 My PA who prescribed the Efudex said NOT to use an antibiotic cream such as Neosporin.  If the itching continues to increase I'm going to try Emu Oil on one side of my face and my refridgerated pure Aloe Gel on the other side to see which helps more.

My last application (of 21 days/ 2x's/day) will be Monday night.  Tomorrow I'm going to call my PA to see if I should continue a little longer on the newer spots just showing up.  If they aren't working tomorrow I'll just continue putting it on the new areas until I can reach them next Wed. or Thurs.  My follow up appt. isn't until Jan.7. 

I hope this helps, I know the board first scared me but, also, and more importantly, gave me the courage to do this.  I knew what to expect and that I wasn't the only one going through it. 

P.S.  My poor friends are coming to visit Tuesday and have no idea I'm doing this treatment.  Surprise!!!!   

On 12/20/2007 carpetbagger wrote:

 

On 12/3/2007 ButterflySwimmer wrote:

Who Wants to Do Efudex Therapy Together on the Message Boards?  I'll be beginning tonight.  I'd like a Efudex Buddy to go through this together for support.  Those of you that have already been through this are more than welcome to join in with your experience.

Hi,

I started my treatment on November 29th twice a day for two weeks ending one week ago on December 14th. I treated my entire face. It has been one week since I stopped and I have not peeled and am still very red and spotty. I feel like if I could go back in time I would not do this. Maybe in a week or two I might feel different (I sure hope so).

How is your treatment progressing. How long are you using efudex? Twice a day? What areas are you using it on?

 

I hope all is going well for you. 

 

Hi, Carpetbagger,

Did you call your doc to tell them how you did, or did not do (no peeling)?  When is your follow-up?  I was just wondering if you needed to stay on the cream a little longer.  

Most of your questions are answered on my response to Chicken Chick.  By the way, my PA did say if my faced cracked open or bled at two weeks then I could stop at that time instead of at three weeks.

 Let us hear what your doc says.

Thanks for replying so quickly!  Wow, you're nearly done; sounds like your symptoms are classic.  I was a bit surprised to read about your fatigue and appetite loss.  Not many people report those symptoms.  I'm fully prepared for it as I"ve experienced a lot of that when I've used Aldara on my basal cell lesions.

My MD said not to use anything except water on my face until I'm done with the Rx.  So many people use aloe, Aquaphor, and cortisone creams but he said in his opinion they just interfere with the Rx and I only want to do this once!  I'll really look into good stuff to use once the scabs and dead skin fall off and my beautiful, new skin emerges ( ;

We're Jewish, so my holiday is over and I don't need to worry about Christmas (we're the movie and Chinese food family on Christmas).  New Year's could be a bit of a problem.  We're invited to a big party, but we'll probably stay home with champagne and Dick Clark's New Year's Rockin' Eve.  Sniff: 2 years ago we were in Manhattan on the 31st and it was awesome.  I've been preparing my family, friends and neighbors for this, but judging from the few photos online, it's hard to imagine their responses when they see me mid-treatment.  Let me know how your friends react!

Thanks again and keep me posted on your recovery and I'll let you know how I do starting next week.  Have as comfortable a Christmas as you can.

On 12/20/2007 Chicken Chick wrote:

Thanks for replying so quickly!  Wow, you're nearly done; sounds like your symptoms are classic.  I was a bit surprised to read about your fatigue and appetite loss.  Not many people report those symptoms.  I'm fully prepared for it as I"ve experienced a lot of that when I've used Aldara on my basal cell lesions.

 

My MD said not to use anything except water on my face until I'm done with the Rx.  So many people use aloe, Aquaphor, and cortisone creams but he said in his opinion they just interfere with the Rx and I only want to do this once!  I'll really look into good stuff to use once the scabs and dead skin fall off and my beautiful, new skin emerges ( ;

 

We're Jewish, so my holiday is over and I don't need to worry about Christmas (we're the movie and Chinese food family on Christmas).  New Year's could be a bit of a problem.  We're invited to a big party, but we'll probably stay home with champagne and Dick Clark's New Year's Rockin' Eve.  Sniff: 2 years ago we were in Manhattan on the 31st and it was awesome.  I've been preparing my family, friends and neighbors for this, but judging from the few photos online, it's hard to imagine their responses when they see me mid-treatment.  Let me know how your friends react!

 

Thanks again and keep me posted on your recovery and I'll let you know how I do starting next week.  Have as comfortable a Christmas as you can.

Butterflyswimmer and Chicken Chick,

Butterflyswimmer - glad to hear that your treatment is almost over with (at least the Efudex part) and you probably will now just be going through the healing process, but at least you can start putting moisturizer on your face.  I was interested to hear about the Emu oil that you are using - is that something that your doctor told you about or did you hear it somewhere else?   Are you putting it in the creases of your nose so that the Efudex does not go there?   I was just looking it up on the internet and it was describing the different uses for it and the healing qualities, etc, but I have never heard of it before.   Thank you for outlining your time line of when things started showing up, that is helpful.   I have struggled with when to start this process because of the holidays, but think I will begin sometime around the 23rd or 24th of December.   Keep us posted on how your healing process is going and what you did to be more comfortable.

Chicken Chick - I would be happy to be your Efudex buddy as well since we are starting around the same time, although you might be a few days ahead of me.   Are you doing your entire face?   You said you did this before with Aldera cream?   Isn't that similar to Efudex?  How long ago and was that on a different part of your body?

My doctor also said that I should not use anything else but a very mild face cleanser during the time that I am using the Efudex and should only use Aquaphor, etc. after I am finished (twice a day for 3 weeks).  There does seem to be a lot of differences of opinion when it comes to putting stuff on the skin during the Efudex treatment - it would be nice to know what the best thing to do is....

A friend of mine said that she met someone else that had done Photodynamic Therapy with Blu light instead of the Efudex treatment and said it was a much shorter 'down time' and less irritation to the skin.  Did either of you (or anyone else) research this path?   I may have to ask this in a separate message. 

Anyway, hope everyone has a nice holiday season and will look forward to corresponding with you to see how things are going.