Carac Side Effects

I am on my third week using Carac 5% fluorouracil once per day for 4-6 wks for actininc keratosis on my face. All areas were previously determined to be pre-cancerous.  It is amazing how selectively the cream has attacked the sun damaged spots on my cheeks, right above my upper lip and on my nose. The damaged parts are bright red, dry, sore and scabbed over while adjacent skin is perfectly normal. Unbelieveable scientific breakthrough to search out and destroy potential skin cancers! I look awful and am a bit scared by what is happening to my nose (looks like the skin being attacked is pretty deep) but still in awe of the discovery/treatment and hoping for a cure/cancer preventative despite all the sun damage. Some side effects that I did not expect are: diarrhea, a bit of stomach upset and insomnia. Have not had the cold sore looking spots develop yet but I have had that look in the past while having actinic keratosis treated with liquid nitrogen and it is awful. Makes you want to hide, for sure. My heart goes out to all of you who are having that particular side effect. Makes me count my blessings that I only have a nose that looks like a crow has pecked at it for several days! Hang in there, everyone. I hear that the results are usually spectacular...easier than skin cancer surgery and far more effective. Will let you know how I feel in 2-3 weeks when my nose will probably be non-existent.  Regards, barngirl (too much time outside with the equines and not protected from the sun)   

Know what you mean about the nose. Makes me really glad that I did the treatment. Everyone is telling me how good my skin looks now, but I still have splotches. They only see me with makeup on. (I am a female, regardless of the icon they gave me.

 It is amazing how the cream only attacks the keratitis. My dermo. kept telling me that the lesions on my chest and hands were nothing. After my reaction, I now want to do my shoulders, arms and legs. As I have already had a melanoma in situ on my leg.

Nice to be out in public again. 

 

 

 

 

Hi Freckles39,

So you seemed pleased with the outcome? Did you use Carac or another product? (Carac is apparently weaker than some of the other products.) Do you want to apply to other areas as a cancer prevention treatment or only to improve the appearance of your skin? (I guess I am asking if you know of evidence the cream helps prevent skin cancer.)  When you read the side effect and warnings about these creams you might not want to use them too often or for too long! The warnings do state that they cause cell mutations.

Isn't it funny how the derms don't seem to be very cautious about skin lesions...apparently even with your melanoma history? I guess they see so many serious skin problems that they cannot take a cautious approach... or the insurance companies would push back.

 My mother had a skin cancer that her derm told her was fine, and it wasn't....so I tend to be very suspicious and cautious. (She later died of ovarian cancer.) I have asked that my derm biopsy some of my red/rough areas, even though I had to pay $400 each and they turned out to be "pre-cancerous", not cancerous.  So the derm was right in my case, but rather safe than sorry.  The Carac has not eliminated those red areas and I am still concerned and will keep an eye on those red irritated areas. For you, the treatment cream took away all the red, rough patches and new skin appeared?

Glad your pleased with your result.

I just completed 4 weeks of Effudex treatment for my face, head, neck, and ears, and I learned a couple of useful things (unfortunately, none from the dermatologist).  Following the active treatment phase, I was experiencing significant burning, itching pain.  My dermatologist would not prescribe any pain medications.  I then tried Vasoline and it helped considerably.  The dermatologist had precribed some hydrocortisone, but it only partially helped.  The other issue had to do with the lips.  I had a lot of scarring and blistering on my lower lip and it would bleed with only little provocation (like sneezing or some minor physical movement.  My sister suggested that I get some lanolin (which is a liquid made from sheared sheep's wool) and it has worked remarkably well.  The lanolin binds to the lip better than Vasoline and has a soothing effect.  You can buy lanolin from health food stores. 

I have to say, this has not been a fun experience.  It is near the end, but my lip still somewhat looks like hamburger. 

My one complaint is that the dermtologist did not provide enough information about the effect of the treatment and the possible solutions.  I have a feeling that they may never have personally experienced the extent of the discomfort and the range of treatments for aftercare. 

 

On 1/21/2008 Himads wrote:

I just completed 4 weeks of Effudex treatment for my face, head, neck, and ears, and I learned a couple of useful things (unfortunately, none from the dermatologist).  Following the active treatment phase, I was experiencing significant burning, itching pain.  My dermatologist would not prescribe any pain medications.  I then tried Vasoline and it helped considerably.  The dermatologist had precribed some hydrocortisone, but it only partially helped.  The other issue had to do with the lips.  I had a lot of scarring and blistering on my lower lip and it would bleed with only little provocation (like sneezing or some minor physical movement.  My sister suggested that I get some lanolin (which is a liquid made from sheared sheep's wool) and it has worked remarkably well.  The lanolin binds to the lip better than Vasoline and has a soothing effect.  You can buy lanolin from health food stores. 

I have to say, this has not been a fun experience.  It is near the end, but my lip still somewhat looks like hamburger. 

My one complaint is that the dermtologist did not provide enough information about the effect of the treatment and the possible solutions.  I have a feeling that they may never have personally experienced the extent of the discomfort and the range of treatments for aftercare. 

Yes, I had the same experience regarding my derm's information. She is very well qualified in her field yet merely told me the areas would "get very red". One would have to say that is an understatement! I would guess she never used the product herself. I used to think about physicians as all-knowing etc. but now I see them as one resource (a resource with a good education) and I get lots of online and second-opinion information on all topics and treatments. Seen too many medical mistakes, contrary opinions and the "limits of medicine" over the years. I suppose that I have lowered my expectatations, after living 60 yrs.  

My derm did give me a sample tube of Aquaphor, which is very soothing. Reading the Carac and Efudex messages online, many people mention that Aquaphor (over the counter product) worked better than Vaseline for them. 

But the Cancer Compass messageboards and the internet generally have been wonderful resources....and don't most people nowadays use those to supplement physician advice? Doctors see so many patients that it would be hard for them to compete with the internet in the quantity of information they can dispense.  I Googled the product names and read the "package inserts" to get some more info...I believe I read that Carac should not be used on the lips. (Maybe it has something to do with swallowing the product?)

 Take care. Barngirl

 

Thanks, Barngirl, for the message.  I appreciate your comments, and it's comforting to know that others are going through this experience.  Yes, physicians know what they know, but they do have limitations (as do the rest of us).  The internet is a great resource, and I need to use it more often particularly if I'm considering some medical procedure. 

My pharmacist mentioned aquaphor, but I did not try it because the lanolin was working well.  My face is gradually clearing, but the lip still looks like it is from some zombie movie! 

Now, I assume that Carac and Effudex are the same product.  I will check out the issue about putting this drug on the lips.  I understand the concern about ingesting the product, however, given the amount of blistering and scarring that occurred, there must have been a considerable concentration of actinec keratoses there.  Furure surgery on the lips for basal or squamous cell carcinoma does not sound fun.  Hopefully, the treatment will significantly lower this probability. 

I have definitely promised to use sun screen more regularly.  Anyway, thanks again for your message.

 Himads 

Sorry I didn't get back sooner. Been out of town. I want to do more areas for the cancer prevention. I'm 68 and I can't fight mother nature when it comes to wrinkles. :) Your input has been great, thanks.

 

On 1/23/2008 Himads wrote:

Thanks, Barngirl, for the message.  I appreciate your comments, and it's comforting to know that others are going through this experience.  Yes, physicians know what they know, but they do have limitations (as do the rest of us).  The internet is a great resource, and I need to use it more often particularly if I'm considering some medical procedure. 

My pharmacist mentioned aquaphor, but I did not try it because the lanolin was working well.  My face is gradually clearing, but the lip still looks like it is from some zombie movie! 

Now, I assume that Carac and Effudex are the same product.  I will check out the issue about putting this drug on the lips.  I understand the concern about ingesting the product, however, given the amount of blistering and scarring that occurred, there must have been a considerable concentration of actinec keratoses there.  Furure surgery on the lips for basal or squamous cell carcinoma does not sound fun.  Hopefully, the treatment will significantly lower this probability. 

I have definitely promised to use sun screen more regularly.  Anyway, thanks again for your message.

 Himads 

Hi Himads, 

I have yet to find any statistics - or even any general claims - on whether or not this whole procedure will reduce our chances of getting skin cancer! Would love to know the answer to that $64,000 question. That seems to be that assumption by all involved, but I have not heard any claims from the manufacturer/drug company or from my derm.  My derm put the emphasis on clearing up rough-AK areas on my face.  

And Carac (which appears to be 1/10 the strength of Efudex... 0.5% vs 5%) does cause cell mutations. (Listed as a side effect - with a disclaimer - by the company.) That fact alone makes me concerned since mutations can be a first step in causing cancer. So, please be careful not to swallow too much! 

The new skin coming in on my face is certainly much nicer than my sun-worn skin! Aquaphor has been perfect for me in that it is not greasy at all on my face (I break out easily) and it seems to promote skin healing and growth. But I had never thought about lanolin. Lanolin is a fabulous product that I actually have on hand in the barn. We cannot beat Mother Nature. I buy lanolin in jars for sale in tack/feed and grain (horse supply) stores for my horses' hooves and it is far and away the best product for keeping their hooves supple in Houston heat and dust. There is a testimonial! After applying it, I always rub the lanolin into my hands!  So, I can certainly see why you like the lanolin.

Won't we all be using sunscreen now! I consider myself fortunate to be able to see the damage I have caused by my carelessness, before skin cancer developed. I will surely stay alert to changes in those areas in the future.

Hope this discussion helps others dealing with Carac/Efudes treatments. The new skin is incredibly smooth and quick to develop when you stop the Carac/Efudex. Hang in there all.  Himads, hope you are soon past the lip problems and your logic certainly makes sense to me. I will ask my derm about doing the same thing, although I don't know if I have your determination. Another month away from people and scaring my hubby would be tough. He already looks at me as though..."Now, how much longer are you going to look like this?" Do you just go out in public when nec and forget the stares? Too old to care much but I have had many cashiers who will not look at me and put my change on the counter to avoid contact with my hands. Oh well.

 Take care, Barngirl 

Hi, barngirl.  So, you actually do have a barn.  Thank you for your reply.  That's interesting about the lack of data about actinic keratoses treatment and future cancer.  Hmm. 

To address several of your good comments.  I actually continued to work during most of the procedure, but I took this week off.  I had one cashier start to gag when she saw my face at it's worst.  If only it had been Halloween.  I would have been a natural!  A lot of people would be polite and pretend that nothing was going on.  There were a few who asked what was happened to my face, and I actually appreciated the question.  So, this is definitely a wild process and one that I do not want to go through again for some time.

I have a question for you.  When can I start using sun screen?  I am 11 days post-treatment and the face is starting to clear.  The major scarring is gone (with the exception of the lower lip) on the face with a rather light-to-moderate residual redness.   My dermatologist made some comment about not using sunscreen during the treatment phase but did not mention anything about when to resume sunscreen use.  I, too, was not good about using sunscreen on a regular basis.  That will change. 

With respect to using the 5% fluorouracil on the lips, I had read some comment on the internet from some dermatologist in California that this was only to be done with the recommendation of a dermatologist, but he did not mention the risks involved.  My dermatologist seemed rather cavalier about the lip issue when he recommended putting the fluorouracil on it.  I will ask him about this issue when I have my next appointment.  I'm sure that I ingested some of the stuff.  Hopefully, there will be no long term negative effects. 

I, again, appreciate your comments.

Himads

Hello Himads,

Regarding the use of sunscreen, my derm gave me "Aveeno Baby - Continuous Protection Sunblock Lotion" (SPF 45) which has been ideal for me. It is non-irritating, does not cause my extremely sensitive skin to break out, is waterproof without a greasy residue and does not sting my eyes when I sweat.  I may not be as positive next summer in 110 degrees, but this sunblock has been great for me recently...and winter in Houston is probably comparable to summer in much of the U.S.!  My derm did not make any recommendation on when to apply, but somewhere in my research I read several times that one could apply such products about 2 hours after applying the Carac/Efudex. That said, I have been wearing large brim hats when outside this winter and only using suncreen since I stopped the Carac, just because I did not want to put anything more on the open skin. But I love the Aveeno Baby sunblock and would highly recommend it.

I wanted to point out, in case I scared you, that I believe our bodies' cells get mutated all the time. Radiation (from the sun, medical procedures, dental x-rays, airflight travel), smoking, certain foods, unhealthy air, toxic cleaning products and construction materials in our homes. I am sure others know much more about the topic than I do. But the basic idea is to keep such mutations to a minimum. That is why I am rather curious about whether I used the Carac for cancer prevention or only for cosmetic reasons! (Talk about hindsight.) But, when I read that particular side effect I had to suggest you not swallow more than was necessary. On the other side of the coin, fluorouracil is a chemotherapy drug and (taken internally) has saved and prolonged the lives of people with intestinal/colon cancer. Cannot be all bad.  

Thank you for relating your experiences. It is comforting to know someone else is sharing my experiences. It is funny when someone says, "What happened to your face!" while others try to be polite and not say a word, while still keeping their distance just in case it is contagious. When questioned I also appreciated the opportunity to explain, but I am not sure I would encourage others to use that approach too freely. Just in case the person has a permanent condition! Those who used it with me knew me well enough to realize it was likely temporary and I did take the opportunity to talk about the whole procedure.   Kind of like talking in the Cancer Compass chat room. 

Take care, Himads. Off to the barn to feed the horses (four Morgans) with my sunscreen on. Barngirl