Wanted: A Efudex Buddy

Cool, another buddy!  Yes, started last night (I cried knowing this is the best I'll feel for several weeks).  This morning started to feel some slight pin-pricky (but not painful) tingling sensations on my face.  Yes, I'm using this all over my entire face so as to treat my large AK on my forehead, several smaller lesions which are also probably AKs as well as anything below the surface which can't be seen yet (and my MD and I feel there are probably many given my history).

 

A little background: about 10 years ago I noticed 3 pink, flaky areas, 2 on my left arm and 1 on my left thigh, that never seemed to go away.  They didn't hurt, but just churned skin flakes evey few months.  I went to a dermatologist who diagnosed me with psoriasis.  This didn't surprise me as my mom had it, but even with the steroid creams she gave me, they never went away.  18 mos ago we were in Hawaii and the spot on my thigh suddenly got a lot bigger and began to bleed.  That's when a new dermatologist immediately gave me a new diagnosis of superficial basal cell carcinoma (you'll see this in websites as sBCC).  He prescribed Aldara, which is an immuno-response modifier and makes your own body produce interferon to eliminate the cancer cells.  It's a spot treatment and the lesions swell, get ugly, itchy, oozy for several weeks (most people are told to use it for 4-12 weeks) until finally you form a big scab, it falls off and hopefully no more cancer.  It's not horrible, just very unpleasant.  All those initial 3 lesions were eliminated with the Aldara.  I've since been seeing my MD every 3 months 'cause more spots keep appearing but just on my face.  These next several were small AKs and I had them burned off with liquid nitrogen which also worked fine.  I started Aldara again in October for a big sandpapery lesion (1" across) on my forehead.  Got a huge scab, got infected(sometimes happens with Aldara), scab falls off, but sandpapaey skin is still there.  I had a punch biopsy last Friday and my MD ands I were worried it was squamous cell carcinoma (SCC) which would have required Mohs Micrographic surgery.  Well, "luckily" it's just an AK which most MDs will agree will become SCCs if not treated.

 

Potterylady and Butterfly Swimmer, thanks for your continued posts.  If you're interested in sharing photos (I'm going to take one daily and have my "before" shot already) we can exchange privately.  I'm really happy to have you two to share with!

Day 19: more itching (tolerable-I touch the spots where the itching is & it helps for a short time), today MUCH pain & rawness upon washing this afternoon!!! This morning was painful too but, not untolerable like now! I'm thinking about stopping 2 1/2 days early, except on the spots that have not begun to crust yet & on my original two spots on my forehead for which the Efudex was prescribed. My PA said using Vaseline two hours after the cream was okay. I refuse to put a petroleum product on my open, sensitive face. This treatment is harsh enough. I wonder ( no docs to ask on the weekend or Mon or Tues) if stopping once crusting starts wil be alright, seeing as it keeps working for a while even after treatment stops. If anyone knows, please pass it on. Thanks.

Oops, I forgot... Yes, I'm putting the Emu oil on a Q-tip and putting in the creases on the sides of my nose and corners of mouth, also, around my nostrils to keep the Efudex off. My PA told me to make sure not to get any around there and so this is my way of 'making sure.'

I am so sorry for your misery!  Yes, this is a horrible weekend not to have a Dr. around for advice.  I know this is easy for me to say on day 3 with extremely minimal symptoms, but try to tough it out until Tuesday!  Everything I read beforehand indicated that you get the best results by staying with the Efudex for the full amount of time.  Just wait, I'll be screaming in 2 1/2 weeks...

 

Butterfly Swimmer, I'm sending good thoughts your way tonight to help you get through this.  I've been so depressed these last 3 days knowing what's ahead for me.  Just keep thinking about how great your face will look in a couple of weeks when the new skin comes in.  My MD said that this is better than a chemical peel and could take 5-7 years off your looks. I don't know your age (I'm a 45 yr. old female; read: vain), but this info will hopefully get me through my full 30 days.

 

Hang in there, and have a nice Christmas with your friends!

Butterflyswimmer - I am sorry for your misery as well, it is a hard time of year to be feeling so lousy, but is there ever a good time to do such a treatment?   I was figuring January was a good month to hibernate, so my plan is to start Christmas Eve.  

I am very curious how many spots are going to show up on my face after I put on the cream since there is only one very light spot right now.   Were you suprised how many spots showed up?   I have seen some pictures of people on the internet where their whole face became red and crusty during the treatment.  Did you find that happened to you or did it get red only in the areas where you had the AK's?

Chicken Chick - glad to hear that your symptoms are not too bad yet.   I keep worrying that I will have a bright red face on day 1, but it sounds like that should not happen.   I am also going to take pictures along this journey to see how things progress and in the end, hopefully get better.   I also heard that your skin looks better than ever after the treatment so I hope that is true (if it could only erase wrinkles, I would be very happy).

I hope you both have a nice holiday, and Butterflyswimmer, I would try and hang in there for your entire treatment if you can, just so you don't question down the line if it was long enough - you don't want to have to do it again!  I may feel the same way when I get to that point as it does sound pretty miserable.  Just take it one hour at a time....

2 days and counting to when I start this Efudex journey.....

Good morning, girls.

Today is Day 22.  I stopped 2 1/2 days early.  But, I had asked my PA during week one, if my face started to burn so badly or crack or bleed, if I should go on, and she said "No, you can stop treatment at that point, as long as you have been  using the cream for two weeks."  Considering I was using the  highest dosage (5%) twice a day, and the manufacturer says 2-4 weeks, I felt confident stopping.  Also, I could NOT bring myself to put it on another time since, all of a sudden, it became painful.  

 Now, looking back, I should have stopped a couple of days earlier! My nose didn't get fire red all over until the day I stopped.  

 On Day 20 I was in such burning pain the only thing that kept me from crying was that I knew the tears would burn more!  Though, I was teary. 

Today my face is painful again, with cracking & crusting & burning in the cracking.  Let me say, this stuff keeps right on working long after you stop putting it on!!!  Which makes sense since it doesn't show up all at once.  

About 1/2 of my forehead is affected, my nose, off to the sides of my nose on my cheek, across & above my upper lip, my chin and off to the sides of my chin about a 1/4" from the sides of my mouth.  I didn't put the cream any closer than that.  I'm so thankful I put Emu Oil in my nose creases and corners of my mouth.  As it is I can't smile fully and I have to eat small pieces.  My energy seems improved as of yesterday.  

Washing my face is misery, and afterwards.  Putting a cold, dripping wet wash cloth on my face feels so good.  But, that lasts only a short time.  Today I'm going to try putting some olive oil and, on another area, hylaronic acid (found naturally in skin) on some areas as well as Emu oil on another area.  I want to see which is better at this point.

As far as the de-aging, my upper & side cheecks/face aren't' affected, nor are the outer sides of my chin.  So, if after this torture, if I look 5 years younger, it will only be in some areas, Ha!  I really didn't care about that.  I'd rather have Moh's surgury than go through this!   I tell myself I'm doing a good thing here, since, after all, I am going through this.  But, I'm doing everything possible, by natural means, to prevent skin cancer in the future.  

Just expect the worst after you stop.  And, though it seems most members on this board are not pleased with the lack of information from their docs, I'm disappointed as well that all docs don't have  you come in to be seen after the two week period so they can better access when you should stop after seeing each individual once being on it.  I wish all dermatologists had to go through this before practicing medicine.  Believe me, THAT would take care of both problems!!!

I'll be sure to let you know what oils bring the most comfort as well as tell you how long after treatment stops that I was no longer in pain.   

Enjoy your holidays. 

 

On 12/25/2007 ButterflySwimmer wrote:

Good morning, girls.

Today is Day 22.  I stopped 2 1/2 days early.  But, I had asked my PA during week one, if my face started to burn so badly or crack or bleed, if I should go on, and she said "No, you can stop treatment at that point, as long as you have been  using the cream for two weeks."  Considering I was using the  highest dosage (5%) twice a day, and the manufacturer says 2-4 weeks, I felt confident stopping.  Also, I could NOT bring myself to put it on another time since, all of a sudden, it became painful.  

 Now, looking back, I should have stopped a couple of days earlier! My nose didn't get fire red all over until the day I stopped.  

 On Day 20 I was in such burning pain the only thing that kept me from crying was that I knew the tears would burn more!  Though, I was teary. 

Today my face is painful again, with cracking & crusting & burning in the cracking.  Let me say, this stuff keeps right on working long after you stop putting it on!!!  Which makes sense since it doesn't show up all at once.  

About 1/2 of my forehead is affected, my nose, off to the sides of my nose on my cheek, across & above my upper lip, my chin and off to the sides of my chin about a 1/4" from the sides of my mouth.  I didn't put the cream any closer than that.  I'm so thankful I put Emu Oil in my nose creases and corners of my mouth.  As it is I can't smile fully and I have to eat small pieces.  My energy seems improved as of yesterday.  

Washing my face is misery, and afterwards.  Putting a cold, dripping wet wash cloth on my face feels so good.  But, that lasts only a short time.  Today I'm going to try putting some olive oil and, on another area, hylaronic acid (found naturally in skin) on some areas as well as Emu oil on another area.  I want to see which is better at this point.

As far as the de-aging, my upper & side cheecks/face aren't' affected, nor are the outer sides of my chin.  So, if after this torture, if I look 5 years younger, it will only be in some areas, Ha!  I really didn't care about that.  I'd rather have Moh's surgury than go through this!   I tell myself I'm doing a good thing here, since, after all, I am going through this.  But, I'm doing everything possible, by natural means, to prevent skin cancer in the future.  

Just expect the worst after you stop.  And, though it seems most members on this board are not pleased with the lack of information from their docs, I'm disappointed as well that all docs don't have  you come in to be seen after the two week period so they can better access when you should stop after seeing each individual once being on it.  I wish all dermatologists had to go through this before practicing medicine.  Believe me, THAT would take care of both problems!!!

I'll be sure to let you know what oils bring the most comfort as well as tell you how long after treatment stops that I was no longer in pain.   

Enjoy your holidays. 

Butterflyswimmer,

I hope you are feeling better today.   From what I remember reading, it seems to be, like you said, the worst right after you stop the treatment, but then starts healing pretty quickly.   I agree with what you said about having the doc check you out at the 2 week mark, I may just make an appointment at that time so that my doc can assess how the treatment is going.  It is just more money for them (more office visits) so hopefully I can work that out.

Where did you hear about the Emu oil and is it hard to find?  Did you put on any other moisterizer (Aquaphor, vaseline, etc) while you were doing your Efudex treatment?   I keep reading that people do but my doc keeps saying not to put anything else on.   I am thinking one would have to put on sunscreen if they go out at all - did you?

I have delayed my start date by a couple of days as I am just so nervous to begin the treatment as I know that there are several weeks of being miserable ahead of me.

Again, I hope you are feeling better today and keep us posted on your progress.  

 

Hey guys,

 

I just saw all the activity on this thread so I thought you might appreciate a post I made on another thread (too many separate ones on Efudex).  Here it is:

 

Lots of people write in about using Efudex.  Here is my experience.

I have done it 3 times in the last 5 years or so.  My regime is a bit different from others reported.

Apply to face and ears (avoid eyes!) at night and wash off in the mornig.  Duration, Doc says do it for 2-3 weeks (as long as I can stand it which is about 2.5 weeks).

 Affected areas light up, get ugly and eventually peel.

A few things I have learned:

1.  Lighting up continues for some time after you stop and will bring out areas in thicker skin over the next few days.  A little depressing, but reason to stop before it gets too bad.

2.  The reason to use it is that it is selective.  I believe that when you use it too long, it just kill everything and you lose the selective nature.  Hence my choice is to use it less aggressively, but do it every few years.  This is based on the theory that the drug is more rapidly absorbed by cells that are dividing rapidly.  The reports I have seen on using it twice a day for a month seems excessive -- may as well do one of the full chemical peels which is over much quicker.

3.  Healing seems to be quicker if you use a topical antibiotic such as neosprin or generic equivalent.  Also, the vasline base (I guess) is soothing.  Even better to use the kind with pain killer!

4.  I seem to do better if I get some exercise.  Maybe increased blood flow or you just get your mind off of it?

5.  About the only pleasure you have is in scratching and peeling off the dead skin.  Enjoy!  But as my Doc said, it is probably better than burning them off one at a time.

Just my opinion and experiences. 

What do you mean by "lighting up"?

My Flouruoracil treatment is brand name "Carac" and I posted a lengthy comment entitled "Carac side effects" before I read your post. I should probably start commenting under Efudex, since there seem to be more contibutors using that brand product. I am about half way through my once per day for 4-6 weeks treatment for AK.

Is some kind of a peel also effective in preventing cancers, or are they primarily for appearance?  barngirl (60 yrs old so hardly a "girl", but I do spend time in the barn. Maybe should be called oldbarnhag. :-) ) 

It has been very helpful to read your postings so thank you.  I am beginning Efudex treatment on my face starting this Monday.  I have taken before pictures and intend on keeping a photo journal to help others in the future.  I am very nervous but feel it's going to be worth it in the long run.  With a 93% success rate in killng AK, I'm hopeful that I will avoid future surgeries.  Two years ago I had basil cell and squamous cell removed from my face (side of nose).  When the doctor finally got it all using Mohs surgery it left a hole a liitle larger than a quarter.  He took his time and did an amazing reconstructive job instead of a graph. Even after 80 stitches you can barely see the scar with make up.   I do not want to go through that again and hence why I'm doing Efudex.

 It is a scary thought but I've put it off long enough.  I'm only 36 (as of today) and am ready to fight this battle.  I will be home for the next three weeks (two weeks of treatment and one for recovery).  I'll update the posting with my progress.  If anyone else is just startng your treatment let me know and we can support each other through the progress.  Thank you again to those who have shared their experiences.  I feel better armed with this knowledge.

Best of luck!