Side Effects of Carac or Efudex

Hey all!  Well, today is 11 days post treatment for my lower lip.  I look 99% like me again!!  My kids this morning said "Mommy!  You can kiss us again!"  There is still a little area that has a bit of a scab on it, but I can chew with my mouth closed now  (nice, I know,), I can smile (still feels like I'm "stretching" the bottom lip), and I CAN FLOSS MY TEETH!!  That has been killing me.  I don't know about you other lip people, but until very recently, I haven't even been able to get my toothbrush very far back in my mouth because I couldn't open my mouth that wide. 

Sarla - how are you looking?  I think we're at about the same spot post treatment wise?

Have a great day!

 

Good Morning Everyone,

Michelle, so glad to hear that you are almost 100% and "kissable" once again. Isn't the body an absolutely amazing thing?  It can be put through so much, and still recover. 

Today is day 10 post-TX for me.  And my face looks amazingly different.  It's still pink, but not too unusually pink.  And its covered with dry flaky skin all over.  Not the larger patchy flaky of a few days ago, just tiny 'flakes' everywhere.  Once I shower and moisturize in the morning, it's not too noticable. I stopped using Aquafor because it was stinging a little (interesting that I didnt' seem to notice that during treatment, probably because the stinging was nothing compared to the rest of the pain).  Instead, I've been using the Neutrogena moisturizer that my doctor recommended. It feels good.  As the days have passed, I've noticed that I can stretch my face in almost any expression and not feel like my skin will tear.  Just the slightest tightness today, basically back to normal.  Again, amazing.

We're getting ready to leave for vacation tomorrow.  I'll be back to work after that, and then anticipating the follow-up with my doctor for the final word on whether this treatment was effective for the couple of "trouble spots." I have no doubt that overall, my face is healthier and free of precancer cells, but we'll see if the TX was able to "get everything."

For all of you in the middle of TX, hang in there!  It's all consuming at the time, but really amazing at how quickly the pain and discomfort becomes a fuzzy memory. 

I see that I've used the word AMAZING quite a bit.  But, really... you will be amazed when you reach this point of recovery!  I'll be thinking about you!

Thanks Sarla...for your encouraging words.

Michelle, I've had the same problem with brushing my teeth and even more of a problem with flossing!  Last night I just couldn't floss at all.  I even got some of those plastic pieces that has a little piece of floss on it...couldn't do that last night.

Carol...please don't worry about how much cream your using based on my posts.  I think I've been using too much....the other posts indicate that I've been using too much.  I'm trying to cut back.  Also, I've been using my finger...so you may be right about the glove not absorbing some of the cream.  Hopefully your dr will tell you to quit after 28 days....I'm only doing 21...unless he changes that after my appt.

I have 3 more days of application.  Last night after my shower I told my husband that I just didn't think I could do it 3 more times.   He has become my cheerleader...very encouraging.  But after I put on the cream, I watched the clock to see when the 2 hours were up so I could use Vaseline.  I fell asleep after 1 hour, thankfully (and thanks to the Benadryl I'm taking for this sinus crap), and woke up reaching for that Vaseline!!  I'm better now.... 

What did they do before these sharing sights/internet?  What a wonderful support group!
     Carolhorn asked how I look now - a week and a half since the last "poisoning".  I'm so sad to say there is still redness, but relatively to during treatment, uh...it is a delicate baby pink  :)  I had hoped, of course, that after 2 weeks it would be GONE, but my derm warned me that I might want to use makeup for a little while.  Well I'm not a foundation girl, and I used it yesterday and felt a little like a clown... so today I'm going out and see how I feel about "baring" it.  It is a little splotchy, otherwise it would just look like a fun day in the sun :)  Wearing the foundation created a SEQUENCES situation (get to know Patrick McManus' writing and learn about "sequences" - VERY funny) where I needed to do my eyes, which I usually do, but also lipstick, which I rarely do... sequences... so I spent too much brain energy worrying about smearing my face. 

The skin itself feels pretty good.  I will say that it was a full week past treatment until the first day I didn't FEEL my skin - from underneath, you know?  It finally just felt like my face again.  It was a great day - to just have it there without being so "aware" of it. It wasn't tight, or itchy/burny, or hot - I can't believe how long it continued to feel literally hot, like it was still burning.  But, on a happier note, it felt better the first day or two after I stopped the Carac.  I knew it started healing right away.  And during the first week after treatment I could see improvement every day - less red, less angry, less uncomfortable... MORE peely!  The peeling is about done and I can't see any, haha, unless I put on foundation which gets on the peels and reveals them.  sheesh  You'll be happy to know that the stabbing/poking sensations wear down to nothing... have you had that?  It reminded me of the commercial where the guy is doing home acupuncture by putting push pins in his face... I had the craziest stabbing here and there on my face.  I couldn't really tell if it felt more like the itch or a burning place, but it was so specific like a pin poke.  I really liked someone's idea about carrying around qtips for that - wish I'd thought of it!

My skin is oily, so I switched a few days ago to my Oil of Olay no-oil lotion and it seems happy with that.  ("It" - the face becomes an entity through this.)  Last night I gave it an aquaphor smear, but it doesn't look any better today for it.  It took 2 washes with the Dove in the shower to feel like it was all off though.  After a thorough washing it DOES still feel a little prickly... not stinging, but thirsty for moisture on that new skin.  It does NOT look new and young like some posts had inferred, but it is smoother and I think I will notice that more as it continues to heal.  After years of rough keratosis skin, this might be nice.

I work teaching reading at an elementary and we had conferences my first week of treatment ( I worked that), and the next week off school (Presiden'ts Day week), so I had week 3 and 4 of Carac off AND the last 2 weeks off for healing.  A huge luxury I know, but it was laid out by my derm as the recommendation and I am so happy about it.  So I go back to work Monday - 2 weeks post treatment.  I just holed up at home after week one- I just went to the derm 1/week and back home.  2 days post Carac I went out in the car with my fam, but didn't go in anywhere or have to see anybody.  It wasn't so much vanity as shyness... I didn't want to attract any attention, so I just stayed home.  As I mentioned before, I kind of embraced it and actually enjoyed it.  But I think it was a great luxury to be able to do that too - sort of a "stop the world" or a time out.  On the other hand, I did check in at school with email and did a little work for them from home so it wasn't quite a "marooned on a desert island" experience.  My kids are grown so I didn't have that resposibility either.

As for amount of Carac used - I used it very lightly the first 1 1/2- 2 weeks - out of fear of reaction I think, but once it started tearing up the skin, it took more cuz I could hardly touch it, and the rough terrain just took up more.  My first 30g tube lasted just over 3 weeks, so I still have 1/2-2/3 tube left over.  It seemed a sad irony that the most torn up areas were getting the most poison each morning - like they needed more torture!  The derm had me apply it to my ears (top and outside rim) for 2 weeks but there was no reaction so we stopped that and added the neck for the last 2 weeks, which had a slight response.  I've always had hair down, so my hairline and ears and neck were not too damaged I guess.  By the way, he wrote 1 perscrip for 2 tubes so I only had 1 copay. 

Last thought - and sorry these are so long, but I'm afraid after I'm back to work I won't have any time - my next 2 weeks are booked solid day and night - obligations don't disappear, they just wait and get backed up - but my derm told me to schedule an appt for 4 months (4-6, but 4 works with the school break) to address possible spots that did NOT respond. He said some keratosis spots just don't respond to the Carac and we can freeze/burn them the old way.  THAT wasn't the happiest news, but I'm looking on the sunny side and acknowledging that LOTS of them DID respond and are off my face now.  And was it worth it?  I have to say yes.  After reading about those of you who have had to go through surgeries and plastic surgeries to remove cancers, this was a great chance to avoid a more severe solution.  It's uncomfortable, painful, time consuming, embarassing (one r or 2?) and plenty of other unpleasant stuff, but it's do-able.  It leaves virtually no scar (although this baby soft skin will take some babying - hello 65 sunblock and hat) and barring crazy reactions, is not life threatening.  That reminds me, I asked my derm about pain killers after reading posts to that effect here, and he sent back word that if it was that painful he needed to see me right away and adjust the treatment... so if you're feeling like a perkodan, call your doctor! You may need to be off the carac!!  I took Aleve, but never felt driven to the heavy meds, well, other than benadryl :)

blah blah blah sorry to write another book....      

Paleface...do not apologise for your lengthy post.  It's ALL helpful!

I'm so glad to hear there's no scarring.  I've been worried about the little area at the top of the cheekbone just below and around the eyes..also the 'crows feet' area.  The Carac has really burned them.  Tonight...I think I'll put Vaseline just on those areas and Carac on the rest.  After my showers those areas 'draw up' and distort the shape of my eyes...and the pain is bad enough for pain meds...until I put the cream on....then it's tolerable....

And yea....I definitely wouldn't be this far along if it weren't for this board.  My drs office just didn't talk to me about this whole thing nearly as much as yours.  I really didn't get the coping info either.  The PA didn't even look at it terribly closely when I went last Monday  :(

I, too, marvel at those that can keep working through this.  You're stronger than I!

It's good to hear about the recovery stage. Thanks for giving me something to look forward to.  This message board has been a lifesaver! When I woke up today, and again complained and whined to my husband, he was very sympathetic, as always, and said, "why don't you just skip one dose today and give yourself a little break."  I told him he was crazy and that I didn't come all this way, just to give up.  Then he asked if there was a message board for HUSBANDS of these carac patients!!!!  I know I'm driving him crazy!!  I try not to complain to my friends at work, so it all lands on him.

So I applied the cream again, still feeling the stabbing and poking sensations more than ever. Everyone at work continues to be very sympathetic. They tell me that it just looks like a very bad sunburn.  I know they're saying that just to try to make me feel better, maybe so I will be less self-conscious about the way I look, but it really irritates me even more.  I feel like they are minimizing what I'm going through. So as the days go on, I've just become  less social and keep busy at work.  I'd love to just blurt out just how miserable and painful it really is, but I'm convinced that unless you've experienced this before, there's no way for them to "get it".  So I just let it go.  I really can see the end of this whole ordeal, and am overall encouraged.  Thanks for listening and letting me vent.  I appreciate you guys for being there. Have a great Easter!

Carol, I understand completely when you say that unless a person has gone through the treatment, they are incapable of understanding, really,  no matter how well meaning they may be.  And, the word "cancer" draws up a ton of emotions/reactions from both ends of the spectrum.  I think that's why I had wanted to be as private as possible when I started TX.  Paranoid and weird maybe, but I didn't want people to (minimize) and think I was trying to get attention from it, nor did I want them (to maximize) jumping to conclusions when they heard the words "cancer" and "chemotherapy." I'm perfectly aware, and oh so thankful, that a BCC is a relatively mild form of cancer.  And yet, it is no small thing.  Eventually, everyone at work was made aware of the reason for my absence, as I mentioned earlier, I've learned "personal medical leave" is an impossibility where I work.  My principal called me last week to see how I wanted my absence "handled" because "people were asking." I told her that I didn't want to be dramatic either way or get attention from my absence, and to do what ever she thought was best.  Well, since then I have been receiving flowers, cards, and even a donation in my name.  All very nice and well meaning, but way out of my comfort zone.  I really don't feel that I was "sick" and certainly don't deserve donations in my name. Yikes!

Hi everyone,

Checking back in, haven't written for awhile.  I am on day 34 (20 days post TX).  I finished my 14 day 2X Fluorouracil on 3/2/2008. I feel absolutely wonderful, no peeling, no pain, it was worth it all. My face is soooo smooth and blemish free. I still have a pink sunburn tinge. My daughter just told me it looks like my face is warm.  I suppose it might take a long time for the pink to go away.  In the last week, I got a few pimples, which I never used to get.  I think it was because I was touching my new skin. They have stopped now.  I quit touching my face. Maybe it was from the SPF 70 sunscreen on new skin.

The day I finished my tx, I threw the little bit of cream I had leftover into the garbage. I never want to do that tx ever again. 

I thought my tx burned off a mole for good, but it is now starting to re-appear, but that is OK. The Dermotoligist checked it out b4 I started tx and said it was OK  mole.

I am in Palm Springs, CA right now for Spring Break watching everyone from my shady perch, and I mean everyone, lay out in the sun next to the pools.  I just want to go run out and yell at them.  I hope they have spf 50 or more on. They sit in front of me an sit in deck chairs with their faces pointed directly into the sun for hours !!  A suntan is really an indication of damaged skin.

I can't go in the sun for more than 60 seconds and my face gets redder. So just don't even consider that.  I can't go golfing either. Just too much Sun out there.  I could have gone to the tennis tourney in the day, but skipped it to go to the night session.  I only go to the pools that are in the shade. I did about half my normal workout yesteday for the first time in a month. It felt good.  B4 when I worked out my face felt too hot to continue. It is nice to be back to 90% normal.

Also, wanted to thank everyone.  You were my sounding board for the roughest patch.  I have no idea how I would have gotten through this on my own. So thanks !!

 

Aceace, it's very encouraging to hear that things are going so well. 

Carol and Sarla, I'm wishing my dr had experienced this treatment.  I don't say that to be mean...but they're just not preparing their patients in my opinion.  Carol...how is your face doing?...What day are you on? 

I made it to Day 21!!  I don't see the dr until Wednesday, so I'm going to keep putting the battery acid on the areas around where your glasses sit until I see him. One side, maybe both, feel like they're not 'done'...and that was a suspicious area to start with. 

My daughter lives in California and was raving about the sunny 90 degree weather yesterday...they were headed to the beach!  I said fine...just wear your SPF 70, a hat, long sleeves, long pants and use an umbrella and you'll be set! 

This is day 27. I'm leaving to see the dr within the hour. I'll let you know what happens!! Carol