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dwoodpt

USA
1 Posts

Posted - 09/04/2012 :  16:02:42  Show Profile  Reply with Quote
Just went through the 2 week efudex treatment with a 2 week steroid follow up. I've originally had mohs surgery on my lip and it turned out to be a 4 hr. nightmare. I was cancer free for about a year but it returned on the left side of my lower lip. I requested a consultation with my surgeon so we could go over some questions I had about the first surgery. We discussed the option of efudex. I would have tried anything not to go through the mohs. I did not receive much information from the derm. or the surgeon other than it would be a little unpleasant. I'm glad I called and asked if I should do the entire lip or just the left portion. After about 4 or 5 days it really kicked in and a series of scabs and raw area continued for the rest of the 2 weeks. It would have been extremely difficult if I had done the whole bottom lip. However the whole treatment was basically painless for me. It looked bad and I used a straw a lot , but to look at in the mirror made me smile because I knew it was working. Besides the cancer I had a lot of lip damage that would not heal, that is all gone now. I thank God there are sights like this where people can share there experience it has really helped me. In closing the efudex worked for me. I've also learned with cancer this is just one chapter you really don't know how it will end untill you read the whole book. One observation I've made reading these posts about waiting or starting a treatment, absolutely nothing good can happen waiting !
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MrsG

USA
8 Posts

Posted - 09/09/2012 :  12:55:22  Show Profile  Reply with Quote
Hi All - new to forum . . . first of all thank you all so much for sharing your FU5 experiences - I'm on Day 6 of application to my whole face (minus lips), and must report that the only change I have is in my lower lip - almost as if it is chapped - I'm being more careful with the application. I'm not sure how long I will be using as I see my derm on Day 14 - I'm sure she'll tell me then my continued approach. I too experienced a lack of information from my derm - this site has truly enlightened me, but also has prepared me for any outcome. I seem to run out and buy a new itch remedy everyday:):) . . . I'll keep you all posted . . . and, again thanks for all your comments - you too Jack Russell - I believe you!! Oh, and all the blogs are helpful too - have them 'bookmarked' to check when things get rough!!
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JackRussell

USA
18 Posts

Posted - 09/09/2012 :  16:39:33  Show Profile  Reply with Quote
Hi MrsG - I didn't hide when I did the treatment. I was open and out there. Since that time a few people have come to me telling me they will be doing and asking what to expect. Aside from the discomfort and rash, I emphasized that they must do at least 5 weeks. Though they can clearly see how well I turned out, and they are envious of my complexion and skin, they still do not take the advice and do only 21 days. For a few now a couple years have passed and guess what? They are getting blotches and freckling and fine wrinkles. Me on the other hand, 5 or 6 years have passed and my skin is great. I'm 54 with the complexion of someone 20 years younger. I lost some pigment, and that I have to live with, but I much rather the peace of mind of wiping out any cancer in training and clearing out the blotches on their way to being some kind of liver spot freckles. Find a Dr who knows what they are doing and will help you do 5 weeks. BTW, I put it not only on my face, but my lips, neck all the way around, ears and upper chest. I admit I had more than a few bottles of wine during those 5 weeks to help me though it. I always found the discomfort to be more of a perceived discomfort than anything. Apply it once in the AM & once in the PM. Follow my advice and you'll be thankful you did. The upside of doing it right versus the downside is infinite.
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ecobabe

Australia
2 Posts

Posted - 09/13/2012 :  01:15:32  Show Profile  Reply with Quote
Today my Derm very casually prescribed Efudix with a treatment program of 1 week a month for 4 months. I'm 42 and have had a melanoma removed from my leg and numerous solar keratosis burned off my face and 3 BCCs removed from my shoulders, and we've just discovered a BOwen's on my chest that needs to be excised...

I've spent this afternoon Googling about Efudix/ex and I'm very scared to start the treatment. I am very conscious of my appearance and spend a lot of time outside of the home working which involves standing up in front of a lot of people. Also approaching summer and Christmas it's a very busy social time of the year. OMG I sound so vain, I guess I am! Has anyone had experience of the 1 week a month for 4 months treatment regime? I would like to have an idea of what to expect in terms of redness over the treatment week and also the recovery time from a week's treatment. My Derm recommended doing the treatment this way as he said it would be unlikely that I would be able to handle 28 days straight. I need to treat my whole face, hairline and sections of my lips.

Thanks for this Forum and to the people who've already shared their experiences
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JackRussell

USA
18 Posts

Posted - 09/13/2012 :  08:53:35  Show Profile  Reply with Quote
Hi Ecobabe -
With all due respect the treatment regime prescribed you is idiotic. It makes absolutely ZERO sense! Efudex is a drug which interferes with the replication of cells. It interferes with the RNA in such a way that delays its ability to replicate and the cell eventually can last no longer and dies. Cancer and "pre cancer" type cells (such as the type of cells to which you refer in your post) replicate, as a rule, at a faster rate (have quicker lives) than normal, healthy cells. To apply Efudex once a week makes no sense. In doing so it would only for a moment (less than 24 hours) disrupt the replication. Once that period passed the cell would then replicate. Few to no cancer/precancer cells would die.
The prescribed application of Efudex is once every 12 hours. I applied it for about 5 weeks. Some apply it for only 3 weeks. My results are long term and permanently killed the bad cells as opposed to what the 3 weeks regime did which was leave bad cells deep under the surface.
I have less pigment now but it is worth it. All blotches, freckling and fine lines are gone. It has been over six years now.
I would not recommend doing it before the summer. Your skin will be fragile after treatment and must be protected from the sun. And for the rest of your life you must protect it because it will continue to be fragile.
People on this forum are poorly informed. Many Dr's appear poorly informed as well. I live in Boston, Mass. I went to the best Dr's on the planet at Dana Farber Cancer Institute. They told me the right thing to do. I bit the bullet and did my five weeks. You have to bite the bullet, take the discomfort and suck up the vanity. Do you want to die of skin cancer? How about being sliced and diced and scared having these things removed?
And when applying it, if a spot continues to be getting red at 5 weeks do not stop applying it to the spot. Do not stop until it scabs over.
A month after you finish treatment you will be back to normal - except for any deep spots which you chased beyond the 5 weeks.
When you start treatment it takes about a week to start getting red. Once you finish treatment it takes about 3 weeks to look like your old self.
So do it right and do 5 weeks!!!
Sure it's uncomfortable but I thought Ausie chicks were tough.
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deruo

Canada
21 Posts

Posted - 09/13/2012 :  09:38:50  Show Profile  Reply with Quote
JackRussel, to clarify I believe she meant that her derm said to apply it FOR a week a month for 4 months, Not to apply it once a week. Thats the way I read it anyway.
Either way, I agree that this is not enough. My face only started rocking after a week of twice daily applications.

I see no reason to put down other members here as being poorly informed. Whose fault is that? We are here to help others. We are not Drs. Nor presumably, are you. I wasn't thrilled with my Dr. but as we've seen there are wildly varying lengths of treatment and some Drs. can't seem to agree on what is "standard".

Everyone is different. My face was not "back to normal" after a month. I finished on November 23rd and was still patchy dark pink in January into February. Not as bad as it was, but still. Certainly not "normal".

Now ecobabe, all this being said - I do agree with JackRussell on several points. First, based on what you've described about your medical history, I would not think that this treatment is going to do that much for you. Unless your Dr is trying to get you started during your summer and then do a heavier treatment afterwards. If you have a choice, I would not do the twice daily treatment during the summer as your skin becomes extremely sensitive to the sun and heat. I asked my derm if I could wait until the fall (for several reasons) and he said no problem. Finally, no one "wants" to do this, but is death from skin cancer/melanoma a better alternative? Permanent disfiguring scars from surgery make you feel better? Of course not. Suck it up and get it done.

If you are like most Aussies I've met, you probably spent a lot of time outdoors in the sun, and based on what you've experienced already, it sounds like you'll have what the Drs. call "a good reaction" to Efudex. Most of us care a great deal about our appearance and for those of us working with the public it makes it even rockier, but seriously.... this has to be done. You've already got a history of melanoma and BCC, and now something to be excised!

For what it's worth ecobabe, my Dr. told me to do it for 30 days. He suggested I do it in sections. Forehead first and then rest of face. I decided that if it was bad, I might not want to do the rest of my face after the first section was done, so I did it all at once. I'm glad I did. No it wasn't pleasant. Yes, I took time off work towards the end, yes I got some stares but thats their issue, not mine. On the plus side, I know I killed a lot, if not most of the pre-cancerous cells there AND got rid of a great deal of wrinkles at the same time ;-)

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dolfan

USA
39 Posts

Posted - 09/13/2012 :  10:04:16  Show Profile  Reply with Quote
I need to move to Canada
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deruo

Canada
21 Posts

Posted - 09/13/2012 :  10:30:14  Show Profile  Reply with Quote
Why's that dolfan? Politics aside, south Florida isn't so bad.... or is it?
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anivoc

645 Posts

Posted - 09/13/2012 :  12:44:45  Show Profile  Reply with Quote
There's a lot of talk in this thread about dying from skin cancer.

To be clear very few people die from non-melanoma skin cancers and melanoma is melanoma not actenic keratosis, squamous or basal cell.
As I understand it these non melanoma cancer don't "turn into" melanoma. Melanoma is a different animal and when Dan set this site up he made it clear this is for treating non melanoma skin cancers..Basically though there are a lot of people here who claim they have beaten melanoma alternatively..The proof of the pudding has yet to be shown clearly or properly documented.

That said.. Efudex was a early method of treatment of non melanoma skin cancers. It was not developed for them but as a chemotherapy drug. As ocologist treated patients , those with non melanoma skin cancers started breaking out with sores all over their sun damaged bodies. The medical world connected the dots and big pharma developed a diluted down version to treat skin cancers..

I remember my sister first using it @ 20+ years ago..and me buying some from online and using it on some small Ak's I had.. A few years later when I was speaking to one well known derm here in California he said he had quit prescribing it because he felt there were better faster treatments now and that because effudex is so hard to deal with a lot of people quit before they should leaving bad cells hidden below to fester and grow unnoticed... Great!

Anyway to those of you using it follow through.. IMO there are a lot of equal or better alternative options here on this site that are faster and will provide equally good results with less time and pain.

Just my opinion and observation and to clarify...I am just a lay person taking stabs in the dark like the rest of us here.
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dolfan

USA
39 Posts

Posted - 09/13/2012 :  14:55:34  Show Profile  Reply with Quote
The problem with effudex is the heat and the sun exposure. I would love to be over and done with it in one shot, witch is what efudex sells in it's ad. My problem is my lifestyle and the fact that the pain and suffering from that cream would make me want to quit after the going got tough....just being honest.
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deruo

Canada
21 Posts

Posted - 09/13/2012 :  15:07:34  Show Profile  Reply with Quote
Ah I get what you mean. Nothing wrong with being honest.

Ideally, I think it would be best to do it at a time of year when the sun and heat isn't at its peak, wherever you live. Especially if you spend a lot of time outdoors during daylight hours or can't make changes to your lifestyle for any period of time.

My new dermo has said that Efudex wouldn't have been her first choice for the reasons we've all heard about pain etc. She seems to prefer Aldara. I have a follow up with her in November so we'll see!
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ecobabe

Australia
2 Posts

Posted - 09/14/2012 :  00:57:33  Show Profile  Reply with Quote
Thanks Guys, how to scare a newbie off.

My dermatologist is one of Australia's leading skin cancer specialists. I have been under his care for the past 6 years. I will follow the regime as he has prescribed because he has a great deal of clinical and professional experience.

His preference for 1 week of twice daily applications, monthly, for 4 months is based on patient compliance and outcomes. I did the first application this morning.
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dolfan

USA
39 Posts

Posted - 09/14/2012 :  08:43:42  Show Profile  Reply with Quote
I have a friend here in Miami who does it the same way as prescribed by his derm. He said it was no big deal and I told him what I read about (five weeks) and he said that was not necessary. Anything is better than nothing and I think you guys in cold climates should open up a halfway house for recovering efudex addicts to recover (LOL)
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MsDubbs

USA
10 Posts

Posted - 09/14/2012 :  22:40:18  Show Profile  Reply with Quote
I've been on Efudex for 4 weeks and still have two to go. I have both basel cell and squamous cell cancer on my scalp. My scalp is really tender right now and I've lost a good bit of hair. The side effects I've had were nausea and metallic taste to begin with and itching headaches, and hair loss now. I've included pics and it's pretty nasty looking.

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Edited by - MsDubbs on 09/16/2012 01:56:36
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John Howell

3 Posts

Posted - 09/17/2012 :  13:14:58  Show Profile  Reply with Quote
I am ten days into Efudex for my hands and arms. I am the usual mess as described above.
Maybe I am a screwball but I have and unusual experience with taste that may be a side effect. Particularly, some things have taken a bitter aftertaste and my old afternoon glass of wine- my usual brand- doesn't taste so good.
Has anyone experienced this? This symptom onset about the time I started on Efudex.
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MsDubbs

USA
10 Posts

Posted - 09/17/2012 :  13:33:29  Show Profile  Reply with Quote
I don't have the metallic taste anymore, but nothing tastes quite right.
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John Howell

3 Posts

Posted - 09/18/2012 :  18:08:36  Show Profile  Reply with Quote
I am day twelve into it, more or less. I will keep going until the tube runs out. On a scale of 1-10 I would put it all at about a 1.7. The burn has become an itch. Last night I could not sleep and had to go away from my bride of 52 years and head to the couch.
I am a Marine with two hitches, one in Twentynine Palms where the desert sun was brutal. We had no full covers there or in Vietnam nor sunblock. And even if they had them I don't think the Marine Corps cared enough about us to give us the junk. So Leathernecks became Cancernecks. Everywhere that the sun don't shine I have had the squalmos and basal and all the rest. I now look like a leper but what the hell, life is the sum total of all experience. I have absorbed a lot of sunshine.
To you who are heading into the treatment: Stick it out. Life can and will deal you worse. To the gals who have put your pics up with your burn marks: You are all beautiful.
Semper Fi
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dolfan

USA
39 Posts

Posted - 09/18/2012 :  18:48:19  Show Profile  Reply with Quote
nice post John, my Dad was veteran of WW2 and Korea and died from cancer that they said was from the fallout of being near the atomic bomb in Nagasaki. I don't know if that is true, but I feel lucky to have escaped the horror of war.
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MrsG

USA
8 Posts

Posted - 09/20/2012 :  08:35:33  Show Profile  Reply with Quote
Day 16 for me - had my two week appointment with the derm Tuesday . . . all on schedule, was instructed to continue for two months - yes two months, not weeks - OK with me - want to get it all out and move on . . .sunblock will now be my friend. Experiencing many red blotches, some drying and itching, but bearable - Aquaphor is helpful:):) Gool luck all!!!
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MsDubbs

USA
10 Posts

Posted - 09/21/2012 :  00:12:51  Show Profile  Reply with Quote
MrsG, good luck to you! I have 11 more days.
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JackRussell

USA
18 Posts

Posted - 09/21/2012 :  08:31:26  Show Profile  Reply with Quote
I love the spirit I see coming from MsDubbs, MrsG and John Howell. You all seem to be intent on going the needed distance [with this drug] to get the job done right. I have been begging people on this forum to bite the bullet and go the requuired amount of time to get the required outcome. When this is all done and you are 1,2,3,4 years out make sure you return to this forum as I have to report how you are doing. It's been about 6 years for me and still my skin is great. I'm paler but my complexion and skin tone are great. The time I did with effudex was well worth it - and I have no idea the problems from which it may have saved me.
Keep the pressure on!
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MsDubbs

USA
10 Posts

Posted - 09/21/2012 :  10:06:53  Show Profile  Reply with Quote
Thanks JackRussell!!
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John Howell

3 Posts

Posted - 09/22/2012 :  17:34:02  Show Profile  Reply with Quote
Well, fans, I am at day 18 or 19. The blisters have all turned scabby. I am sitting on my patio with a half-dozen sparrows chirping around my feet, peeling off scabs, tossing them. The sparrows love them.
I thought you might all appreciate a little Marine Corps humor in the midst of your misery. Sometimes laughter was all that we had.

Semper Fi
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MsDubbs

USA
10 Posts

Posted - 09/23/2012 :  01:42:19  Show Profile  Reply with Quote
Thanks for the chuckle!! I have until the last day of Sept.
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MrsG

USA
8 Posts

Posted - 09/23/2012 :  12:41:14  Show Profile  Reply with Quote
Happy Sunday all . . . at least it seems we're all moving along . . . must say I really do miss my bike riding and golf, but have been shopping to keep the exercise going - well, I think I'm pretty much 'housebound' now - it's not pretty:):) . . . too difficult to get makeup on - I'd go out if I really needed to though:):) - quickly!!! Have some house projects that I've been avoiding that I'll start working on . . . stay well all!!!!
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MrsG

USA
8 Posts

Posted - 09/25/2012 :  15:05:54  Show Profile  Reply with Quote
Cannot quite believe the change just since Sunday - woke up Monday morning all swollen, then again this morning - looks like I have a bad case of the mumps - do have a call into my derm, but she has not called:( . . . no swelling anywhere else other than my face, so not sure if it is an allergic reaction or not . . . well, maybe I'll go get some cheese for my 'whine' . . . thanks for this place . . . :) . . . well, she just called - use cold compresses - normal reaction to the damage done earlier in my tanning days . . . use sunblock!!!! She did say I could cut back or stop for a few days, but I'll try to tough it out and see what happens . . . later all:)
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MrsG

USA
8 Posts

Posted - 10/01/2012 :  10:16:23  Show Profile  Reply with Quote
Well, how is everyone doing????? . . . it's been a tough week for me, but I'm pulling through - did put a call in today for some pain relief:( . . . sometimes the old saying "silence is golden" is not the case - my silence was due to no energy to share - I know this will be over in time, but it is difficult, but, better than the possible other choice . . . use sunblock all!!!!
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deruo

Canada
21 Posts

Posted - 10/01/2012 :  11:08:42  Show Profile  Reply with Quote
Hang in there MrsG!
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MsDubbs

USA
10 Posts

Posted - 10/01/2012 :  12:01:25  Show Profile  Reply with Quote
My last day of efudex was Sunday
I just wonder how long it takes to heal up? Anyone know?
MrsG, hang in there!
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deruo

Canada
21 Posts

Posted - 10/01/2012 :  12:45:40  Show Profile  Reply with Quote
Everyone is probably a little different. The worst for me was the week after I finished.
Healing progressed very quickly from then. I was various shades of red through dark pinks for about a month after. Then just pink patches that "flushed" after exercise, washing my face or applying sunscreen for about another 2 months.
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MsDubbs

USA
10 Posts

Posted - 10/01/2012 :  16:52:32  Show Profile  Reply with Quote
Thanks for the reply! I'm just a little to anxious I guess. I've lost a lot of hair also, but that will grow back. I've learned alot from everyone on this board!
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MrsG

USA
8 Posts

Posted - 10/04/2012 :  10:04:25  Show Profile  Reply with Quote
Hi All - hope you are progressing OK . . . @Jack Russell - you seem to be experienced in 30 day and 60 day treatments - I'm on day 30 of my 60 day cycle - curious, will I experience the sloughing at the same time the 28 day peeps, or will I have to wait until the 60 day period . . . just trying to prepare for a wedding I would love to attend at the beginning of November and wondering if I'll need a "fascinator with a veil":)

MsDubbs - hope you are doing well . . . thanks for the encouragement:)
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pamos

USA
2 Posts

Posted - 10/06/2012 :  01:47:46  Show Profile  Reply with Quote
I am just about done with week 5 of Efudex. I finally called my derm today since I have been using it once a day and wanted to find out if I should use it until I stop getting a reaction to it or just stop after a specified amount of time. Of course I was only able to speak to a tech, and it seemed like I knew more about it then she did. In any case, the derm said to use it for 3 weeks. From this forum, that does not seem long enough, so I went to 5 weeks. I have had scabbing over for the last week and half. Just wondering if because I was only applying it once a day if I should go longer? I have been applying it to each cheek. Its been pretty sore and painful, today I resorted to putting ice packs on my face at work - thats always attractive. I just do not want to have to re-do the treatment.

Edited by - pamos on 10/06/2012 01:55:28
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JackRussell

USA
18 Posts

Posted - 10/06/2012 :  09:05:55  Show Profile  Reply with Quote
Hi MrsG,
I reviewed your posts and was unable to determine the frequency of your applications. For me, I had applied Efudex twice a day to my face, ears and neck for 5 weeks. If you are on the same regime as I and you are about 33 days into it then you will soon pass my 35 days.
I recall it taking me two weeks after ending treatment to finish with most the peeling, and taking me about a month to fully return to normal. Actually, the first week after ending treatment you will make tremendous progress.
If you are applying it thru October and attending a wedding in early November, in say in the first week of November, then maybe think about the veil – and also consider it for the second week of November. By the third week at least you'll be feeling better about yourself even though its noticeable, but at least much of the peeling is over.
I will tell you though, just making it to the last day, that last application and knowing that, that is it. That is such a great feeling. You’ll be anxious to get the healing over with and get back to normal, but just that feeling that you have put the treatment behind you is so good.
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MrsG

USA
8 Posts

Posted - 10/06/2012 :  13:48:42  Show Profile  Reply with Quote
Thanks JackRussell - I started Labor Day in the evening and do two applications a day on my whole face . . . when I saw my derm two weeks later, she said to do two months - admittedly, I'm not sure if that is two months total, or two more months - regardless, I'm still trying to figure out what state I'll be in in the first week of November. If I remember correctly, you mentioned your gf at the time did 60 days, and your brother did three months . . . do you recall when they started major peeling - I've had some peeling, but does not sound like those I've read on blogs, so not sure if my system needs a few days of no FU before doing it's 'after' job . . . oh well, it is what it is - I'll start shopping for a veil:):)

Welcome pamos and good luck . . .

Happy Fall all - the colors are beautiful here - well, what I can see from the windows:):) Maybe I'll go for a ride tomorrow to check out the area - we live in the most beautiful area of America for Fall colors!!!!
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JackRussell

USA
18 Posts

Posted - 10/07/2012 :  19:00:59  Show Profile  Reply with Quote
[Hi MrsG -
I asked my brother and girlfriend if they recall at what point they started to peel but they were unable. In my case it wasn't untill I stopped the treatment, which makes sense since I would think your skin cells would need to start regenerating for that to happen and that will not happen as long as you are on EF5.
My GF had basil cell which was being treated. My brother was taking it without a DR's guidance to treat what he (in his non-expert opinion) thought was pearl cell. Last I read EF5 was OK'd by the FDA only for AK & basil. I had melanoma on my neck which lit up when hit with EF5 (I later had this surgically removed). So it obviousely reacts to many non-normal cells. My brother went 90 days and we thought he had permanently scarred himself but after several months he was looking great.
I'm glad you are more than half way there - I'm really psyched for you. Come the end of November you are going to be amazed by how healthy your skin is.
You have come this far and I know you can go the distance.
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MrsG

USA
8 Posts

Posted - 10/10/2012 :  13:04:26  Show Profile  Reply with Quote
Hi All - thanks Jack for your info . . . well, I made it to 35 1/2 days - had an already schedule with my primary and she was not pleased with the stage of my face, so we all decided time to quit . . . now comes the aftermath . . . stay strong all:):)
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shaecakes

USA
3 Posts

Posted - 10/11/2012 :  14:54:37  Show Profile  Reply with Quote
--------------------------------------------------------------------------------

Hello, newbie here. I found this site and have read it from the beginning. I am on day 10 of 2x a day and nothing yet other than a little fatigue and occational spot burning. I wonder, is this stuff just not working, or do I just not have any sun damage? I am doing the treatment because the derm did a biopsy on one of the little red raised spots on my shoulder and came back positive. I have a lot more of them and am putting this on my face, chest, shoulders and arms. My chest has the most. I just don't get why I have had no reaction. Anyone have any clues?
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pamos

USA
2 Posts

Posted - 10/12/2012 :  12:38:17  Show Profile  Reply with Quote
I was on it for over 3 weeks before I started to see any reaction. Trust me it will come! You are covering a lot of areas so don't get discouraged.
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JackRussell

USA
18 Posts

Posted - 10/12/2012 :  12:40:55  Show Profile  Reply with Quote
Hi Shaecakes -
After washing the area to be treated you must rub a dab of cream onto/into that area. Apply when the skin is dry. Do not wash this area until it is time for the next application. In my situation, I did not put any creams or other products on this area during the time of treatment.
In all cases with which I am familiar, during the first week (7 days) of treatment you are in the "getting pink" stage. After this period is when the more pronounced effects begin. At day ten, if you have sun damage then you should have more than a few red spots. You should be at a point where you are starting to see and feel the effects which have brought many people to this website. You should pretty much be at a point where you are becoming anxious and counting the days to when you can stop treatment.
Hope this helps.
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JackRussell

USA
18 Posts

Posted - 10/12/2012 :  12:47:15  Show Profile  Reply with Quote
MrsG -
What was it that the Dr saw that caused the Dr to discontinue?
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shaecakes

USA
3 Posts

Posted - 10/12/2012 :  14:47:07  Show Profile  Reply with Quote
Thanx everyone, I am only on a 14 day treatment, 2xs a day. If I don't show anything by the time I am done, should I contact the doc? After everything I have read, it almost seems like 14 days is very little time.
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Longdrop

Papua New Guinea
18 Posts

Posted - 10/13/2012 :  03:57:19  Show Profile  Reply with Quote
Hey guys. I was prescribed 21 days Efudex twice a day by a dermatologist two years ago. He showed me pictures of people who had done enough and who had done too little. It was unpleasant and after 19 days I went back to my general practitioner to check as I had started to bleed into my pillow. He said I had done enough and to stop. I agreed.
I suggest people bear in mind
1) Efudex doesn't appear to cure melanoma ever, at all. Forget it. Actinic keratoses yes, BCC's yes, SCC's and Bowen's maybe if they are babies. The big M, no. It is open to question whether it will light them up, but I suspect it might. Won't kill them though.
2) there is some research which suggests a small amount of sun exposure during treatment potentiates the treatment (I didn't do this as it is too scary and inadequately researched)
3) My face is now fine and I have used the cream a couple of times to clear up stuff I missed (eg in the inside top of one ear for heaven's sake but it worked a treat in two weeks)
4) I pay these guys lots of money to tell me what to do. They have lots of experience of it. I don't, so I do what they say.
5) I strongly suspect the the treatment regime prescribed depends on the dermatologist's view of the extent and nature of the damage. Just do what they say. If it doesn't work you can try again, or something else. Love to all.
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5FU Bootcamp Grad

USA
1 Posts

Posted - 10/14/2012 :  01:14:30  Show Profile  Reply with Quote
I completed seven weeks of 5% fluorouracil to my face and neck, once every other day for the first week, once a day for the second week, and twice a day during weeks three to seven. Before starting the treatment, I read everything that I could find on the Internet about what worked for other people. I want to share some things that I learned from my personal experience.

Removing dead tissue: Both my doctor and I was surprised at the extent of sun damage on my face and neck. About 25% of the skin on my face and 50% of the skin on my neck reacted to fluorocuracil and became necrotic. My husband joked that I looked like a burnt hotdog or marshmallow that had been held in the campfire too long. I initially decided not to actively debride any of the necrotic tissue present, but was forced to do so around week four because the surrounding tissue was starting to become red, warm and inflamed from the large amount of dead tissue present. I found that the easiest and most painless way to remove the dead tissue was in the shower. I found that if I allowed the steam and hot water to soften the dead tissue, it would easily come off with gentle rubbing using my fingers. To prevent infection, I washed my face, neck, hands, and fingernails thoroughly with chlorhexidine soap before and after. I debrided at my own pace, stopping whenever the pain was more than I was willing to tolerate and resuming when the pain was back at zero.

Pain control: I discovered that my face and neck would hurt only if I allowed my wounds to become exposed to air and dry out. I purchased and tried a lot of different products over the counter: Bacitracin (which I used while there was a large amount of necrotic tissue present and I was at high risk of developing a skin infection), petroleum jelly, organic castor oil, organic hydrogenated soybean oil, petroleum impregnated gauze, occlusive dressing, non-adherent dressing, etc. What worked for me and allowed me to remain almost pain free during the entire treatment was to liberally apply organic hydrogenated soybean oil (e.g., organic shortening) to the affected areas on my face and neck every four hours using a cotton swab (my Dermatologist really stressed the importance of using something organic because whatever was used would be absorbed into the body). After applying the organic hydrogenated soybean oil to my face and neck, I also covered my neck with non-adherent dressing, and to keep the non-adherent dressing from absorbing the oil and drying out, I covered the non-adherent dressing with a small piece of Saran wrap and held everything in place with a scarf. Because I didn't allow my wounds dry out and scab over, my wounds started to re-epithelialize right away and my wounds were completed healed in 3 weeks.

Hyperpigmentation following fluorouracil treatment: My understanding is that most people do not experience hyperpigmentation following treatment with fluorouracil. I recall only one person mentioning that it happened to her, and she said that her scars faded in 2-3 months. It was a concern of mine, and my dermatologist told me that I wouldn't scar from the treatment and was surprised when I did scar. I am now almost two months post treatment, and the scars on my face has almost completely faded. The scars on my neck will take a bit longer (2-3 years?) to completely fade. I wear sunscreen and a hat and avoid the sun, if I can, to prevent the scars on my face and neck from darkening.
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anivoc

645 Posts

Posted - 10/14/2012 :  09:03:31  Show Profile  Reply with Quote
5FUGrad

Thanks for the detailed report...Wow! Congratulations! Sounds like you really had a lot of skin damage. This new protocol with 5FU is a lot different than what was prescribed 15-20 years ago. My sister used it but just for a week or so.

It is interesting to me in regards to the extent of damaged skin we all actually have.

The rub it everywhere and see where it reacts is a sure way to find all sun damaged skin, I just wonder if all of it would necessarily evolve into skin cancer.

There are so many people here using a myriad of alternative treatment I just don't know if I would go the 5FU route but for those that do, If you do the 5 week protocol it sounds like it is sure you are going to remove all damaged areas for a long while.

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MsDubbs

USA
10 Posts

Posted - 10/23/2012 :  23:38:51  Show Profile  Reply with Quote
I've been finished with Efudex for 3 weeks and my hair is still falling out. Anyone else had this problem?
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samrad

Canada
1 Posts

Posted - 10/24/2012 :  10:28:50  Show Profile  Reply with Quote
I am on my second time around with efudex. The first time was 5 yrs ago when I did my face, chest and neck.I had an excellent reaction according to my Dermatologist, I applied the cream 2x day for 21 days. I am now doing my neck and chest again, holding off on my face as I do not want to take time off work as I did before, as I stayed in and hibernated for 3 months, too embarrassed to go out in public.
As soon as I applied the Efudex this time within 2 days I had nasty red areas everywhere. I cannot really understand as to WHY this has happened again as I have never exposed myself to the sun especially the chest, the neck is exposed just naturally, but I have always used a high % sunscreen. It makes me wonder if all this pain and inconvenience is worth going through if it is not clearing up. This time the areas are larger as compared to the pictures I took before and is seems much more tight and painful and itchy. I am doing 5 weeks 2x day.
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MsDubbs

USA
10 Posts

Posted - 10/25/2012 :  11:48:51  Show Profile  Reply with Quote
Hi Samrad! I don't have an answer for you, but someone will come along that knows more about it than me. Good luck with the treatment!
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Dianne57

2 Posts

Posted - 11/18/2012 :  18:28:30  Show Profile  Reply with Quote
OK, I am doing my face with Efudex in sections. My doctor has me doing 2 weeks and wanted me to do my face all at once. I am curious if anyone knows if you repeat it again in 90 days do you have the same reaction or is it much less.
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MsDubbs

USA
10 Posts

Posted - 11/21/2012 :  22:29:56  Show Profile  Reply with Quote
I haven't had to repeat yet, but see the doc. Nov. 29th and hope he says I don't have to. I did the efudex for 6 weeks though. There's pics and links in some of the older posts if you want an idea of what to expect. Betty
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Disclaimer: The three most common types of skin cancer are basal cell carcinoma, squamous cell carcinoma, and melanoma. While melanoma is the most dangerous type, keep in mind that any cancer and potentially some cancer treatments can cause injury or death. The various views expressed in these public forums should not be considered as medical advice. See your qualified health-care professional for medical attention, advice, diagnosis, and treatments.