Wanted: A Efudex Buddy

Well, the experiences of others with Carac or Efudex are certainly scary but it is a great resource and comfort to not feel alone. 

I started using Carac on my face at night about 2 1/2 weeks ago for AK and my nose is getting huge, uniformly very red, swollen etc. I wonder if there was not more going on there than the dermatologist realized. There are selective spots which are very red and crusty on my cheeks and under my nose, but this nose thing is creepy. Does anyone have any knowledge of whether the Carac can make things worse if used on existing cancers? Should I call my derm?

Y'all might like to know that systematic reactions really do occur. My eyes are dry and crusty in the morning, but most annoyingly my stomach aches and is upset and I am dealing with quick trips to the bathroom.  A neighbor of ours also had stomach upset (hers with Efudex). And I think the tingling in my lips is not a good sign...although I try to keep the Carac off my lips (at this time), I think they are starting to swell.

Boy, don't we pay for our carefree youth! Thanks. Barngirl   

On 1/10/2008 Momnmotion wrote:

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!

Dear Momnmotion:

I'm 43 & haven't had quite the history you have, but I did worship the sun for too many years and am paying the price now.  I am on Day 7 of Efudex treatment on my face and chest and would love another female to talk to in this process.  I've been emailing a guy in Utah who contacted me through this site.  He's way ahead of me though.  We went around the site b/c we both kept finding difficulty maneuvering around, finding messages, and losing messages while typing them.  Hopefully I will have better luck this time!  I'm just now starting to see signs of reaction on my face.  Some days I read postings on this site and feel a sense of commaradarie, then others I just get scared to death.  I'm doing a journal every day and taking photos.  Lighting in my house isn't great (and I'm my own photographer, making for some pretty goofy shots), so quality can be an issue, but I'm hoping it'll help me through it and I can share it with others to help them through too.  I'm a vain woman and I think I'm finding others are too - since I've only seen one photo journal from a woman and it stops abruptly at day 10.

On 1/15/2008 Anxious wrote:

 

On 1/10/2008 Momnmotion wrote:

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!

Dear Momnmotion:

I'm 43 & haven't had quite the history you have, but I did worship the sun for too many years and am paying the price now.  I am on Day 7 of Efudex treatment on my face and chest and would love another female to talk to in this process.  I've been emailing a guy in Utah who contacted me through this site.  He's way ahead of me though.  We went around the site b/c we both kept finding difficulty maneuvering around, finding messages, and losing messages while typing them.  Hopefully I will have better luck this time!  I'm just now starting to see signs of reaction on my face.  Some days I read postings on this site and feel a sense of commaradarie, then others I just get scared to death.  I'm doing a journal every day and taking photos.  Lighting in my house isn't great (and I'm my own photographer, making for some pretty goofy shots), so quality can be an issue, but I'm hoping it'll help me through it and I can share it with others to help them through too.  I'm a vain woman and I think I'm finding others are too - since I've only seen one photo journal from a woman and it stops abruptly at day 10.

Hi there!  I was so glad to see yoru response.  I'm now day 3 of treatment and I keep having that feeling like it's not working.  There is absolutey no change on my face right now.  I know the reaction can be delayed so it's helpful to get others opinions.  I am also journaling and taking photos each day.  Let me know how your treatment is going.  Are you doing your entire face?  I am doing from my mouth up to my hairline.  I am also applyinig a very thin layer as I heard you can burn yourself applying too much.  What about you?  It's so hard to know if I'm doing this treatment the right way.

 Look foward to hearing from you.

Hi Ladies,

I am now finished with my 3 week, twice a day efudex treatment on my face (yeah!).  I finished two days ago and stopped a couple days earlier on a few areas on my face that were just very red and I thought they had enough.

One of you mentioned that you were on day 3 and not feeling anything yet.   I wanted to let you know that for me, it was about 8 or so until I really started noticing the redness come out, and it was in areas that were not even close to the original AK that was diagnosed on my cheek.  I could feel a little tingling or slight itchiness on my skin before that, but it was not that bad at that point in time.   In fact, I spoke to my dermatologist over the phone at around that time, and she suggested doing a 4 week treatment instead of a 3 week treatment (yikes!).  Well  it was not too long after the 8th or 9th day that certain areas started lighting up (getting red).  Different areas on my face, definitely showed signs of redness at different points in time.  My nose, a prime sunburn spot over the years, did not have any red spots until fairly late in my treatment, which was surprising to me.   After talking to my dermatologist again, she said to go back to the 3 week treatment.

As mentioned above, I had one small AK on my upper cheek, not too far from my nose.  The areas that really became red however, were the areas around my nose to the sides of my nostrils and onto the cheek part right there and then down the 'laugh lines' to the corners of my mouth and then down to my jaw line from there and across my whole chin.  I wasn't originally going to do my chin as one of the dermatalogists said if I did not have any spots there, that I did not have to.   I decided to do it because I was doing the rest of my face, so I figured I might as well and boy did that area get red!

I was very nervous to do the treatment just like both of you and I put it off until after the holidays because I did not want to be miserable during that time.  It really is a difficult thing to go through, but once I started, I was determined to see it through knowing that it should get rid of, hopefully, a lot of the damage that I did to my skin over the years and especially in my teen and college days.

With now being in my second day of not putting on the 'dreaded cream', I still look pretty bad, but my skin is not burning or itching like some people that have posted before.   After washing my skin is when I seem to get a little of the burning sensation and I have to say, Aquaphor has been a lifesaver!  I used Aquaphor in my third week of treatment as well after I had left the efudex on my face for at least 2 hours.  My dermatologist mentioned that I could use some hydrocortisone, but this really made my skin burn.   The Aquaphor seemed to provide relief almost immediately - I just patted a little on in certain areas (mostly the red areas around my mouth and chin) and it really stopped the pain, so I highly suggest you get some.

 I have taken photos along the way as well so that I can remember the changes along the way and the timing of these changes.   I am pretty vain so that I don't think I will want to post them for all to see, but would be happy to let you guys know what was happening at different points in time. 

Are you both working?  I feel like I am lucky to work from home (and also part-time) as I really would have had a hard time going out in public looking like I did (and still do).   In fact, I have hardly gone out at all in the last two weeks.  I am hoping that the healing process will go by fairly quickly, at least to a point where I can try to cover up some of the redness with make-up.   My dermatologist said along the way, that I could wear make-up and then could feel more comfortable going out, but when your skin feels all tingly, tight and sensitive, I did not want to try and pile on a bunch of make-up as I thought it might make my skin feel worse.

Anyway, hang in there, keep up with it, and definitely call your dermatologist along the way if you have any questions.  I would be happy to answer any of your questions along the way to let you know what I experienced.   Best of luck!

I

Hi!!  This is a FANTASTIC idea!!

I need a buddy too...female, 45 and have to start treatment on January 28th.  Two weeks, twice daily 5% Efudex cream.  I'm scared to death!!

Yesterday, I told myself it wasn't necessary and I'll watch and wait but that could be destructive.  I've had one lesion on my temple removed surgically last August and a couple of pre spots frozen so my derm wants to "jump ahead" and hopefully cure me.  YIKES...how long will I have to hide out after starting this stuff?

Did I say YIKES loud enough???  YIKES!!!!

I will try to get this posted in the right place!  (2nd attempt) 

Hi All,

I just finished a 21 day treatment of Carac on Jan. 14.  The area being treated was between my upper lip and nose.  Two years ago I treated my forehead and was very pleased with the results.  Both of these times was under the recommendation of my dermatologist for AK's.  I experienced skin tightness, extreme redness, a bad taste in my mouth, slight queasiness, and a headache some days. 

I have read most all the posts (especially the 300+ under "Side Effects of Carac or Efudex")and they were so helpful!  Just to know that others were having some of the same side effects was reassuring. 

I was instructed to use only Vaseline and sun screen (Neutrogena Sensitive - titanium dioxide) if needed during treatment (and Polysporin for cracks or bleeding).  The Vaseline was a life saver!  It made the whole area so much more comfortable.  I think I would have had a much rougher time of it if I had not used this.  As some others have posted, I too, was hesitant to put petroleum on my face, but it relieved the itching, burning and tightness.  (A lot of people have used aquaphor too, but I could not locate that in my area.  It has petroleum in it also.) 

When I saw the doctor Monday, she prescribed an ointment called "Biafine" (pronounced Bee-a-fen) for healing.  http://www.biafine.orthoneutrogena.com/

Again she said use only this or Vaseline (I'm using both).  The Biafine is for full thickness wounds, burns, grafts, skin damage from radiation treatments, etc. and for AK treatment.  It's very soothing, but I still need the vaseline to help with the tightness around my mouth (so I can talk and eat!).  The redness is fading some each day.  I'm glad to be done with this treatment and will be thinking about those of you still going through it.     

Here is the website for aquaphor -http://www.eucerinus.com/products/hb_aho.html

I think there is only one kind.  I just used vaseline and it worked fine.  Two years ago when I did my forehead I did not use anything but the Carac and water.  I don't remember that skin being as tight as it was around my mouth this time. 

On this message board, there's a "Side effects" topic with over 300 posts.  Lots of people mentioned aquaphor.  I read through all the posts (it took several days). Even though the posts are from awhile back, there is still useful information because all of our situations are different.

At the pharmacy, I was not able to find the aquaphor, but I was looking on the shelf where the vaseline was.  I think perhaps I should have looked with cosmetics or even baby supplies (or asked someone). 

I'm feeling much better each day, although the skin is still peeling a lot.  It's regaining the elasticity and I can get my mouth open to eat easily.  I also do some choral singing and am feeling back in shape to pronounce words clearly now. 

Take things a day at a time and hopefully it will pass quickly for you too.

You should be able to find Aquaphor at your grocery store or drug store.   I got mine a long time ago, I think for my kids diaper rash or eczema, whih which would have been several years ago.  If you don't see it in the ailse with vaseline, etc., go ask the Pharmacist.  Even though it is not prescription, I think I have seen it up at the pharmacists' counter.

I am now 4 days post Efudex (21 days 2x a day on face) and am finally feeling like I am starting to heal - but still not comfortable enough to be seen in public.  I am now walking around with a thick layer of Aquaphor on my red skin, not very attractive, but it feels a lot better.  I am hoping that I only have a few more days of hibernation!