CancerCompass message board discussion started by Jef1963 on 2/1/2008 http://www.cancercompass.com/message-board/message/all,20558,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ So your Dr. has prescribed Efudex and all you've heard about is horror stories and pain.  You've maybe seen some photo diaries and are scared to wits to start treatment. Well, don't be.  It can be easy and not that painful. 1. Talk to your Dr about the research done at Ohio State University and the Univ of Alabama.  Efudex is 70% more effective when combined with celecoxib (Celebrex).  See your GP or a cardiologist as Celebrex can be bad on the heart.  Don't just go with what your derm says. 2. Prepare.  Dig out your old pillowcases, sheets, clothing etc.  There will be, at the minimum, lotions and ointments getting everywhere.   Some must have items for me include Vaseline, lots of fresh razors and Aveeno ultra calming shave gel.3.  The first week will be easy unless you end up with a Celebrex script.  With the Celebrex skin becomes very painful within 24 hours.  4.  The main thing to know is that flourouracil is absorbed within the first three hours of putting it on. It comes in a 5% solution in a base of petroleum jelly. A phone call to Valeant's 1-800 number will confirm the three hour absorption rate. You know how reapplying Efudex soothes the irritated skin?  Well you can get the same effect from applying Vaseline on top of the medicine as long as you wait three hours. 5.  Time for the second daily application.  Here's the tough part.  You have to wash and scrub ALL of the Vaseline and any dead skin off.  I use shampoo, Garnier fructis, and a washcloth.  It's the only thing I have found so far that will take off the Vaseline and not burn.   6. At this time I also shave.  I use the Aveeno Ultra Calming Shave Gel, no fragrance and no burn at all.  I use a new razor each time.7.  The worst part of the day: as soon as the water stops running and I pat dry my face the burn sets in.  BIGTIME.  The worst burning I had with just 5FU was about a level 3.  But with the celecoxib, it is 10+... basically unbearable.  I can tell you, worse than being shot, having broken ribs, any pain I've ever known.  The only relief is to get the Efudex back on the skin.  You can't do it fast enough if you're on the 5FU and Celecoxib.8.  Over the next three hours the skin will burn and itch mildly and you will look forward to the vaseline.  9.  Like clockwork apply the Vaseline after 3 hours and enjoy.  You will be tempted/distracted to rub your fingers all over your face for hours at a time.  It feels really good. Really good.You look all glossy and red so it's tough to go out in public but you're fixing a long term problem before it gets out of hand.  It is worth it.Here are some links for the research I've found as well as some important excerpts:“Therefore, 5-FU/celecoxib treatments were almost 70% more effective in reducing tumor number compared to 5-FU alone. ” http://www.nature.com/jid/journal/v122/n6/full/5602371a.html " target="_blank" rel="nofollow">http://www.nature.com/jid/journal/v122/n6/full/5602371a.html   http://www.nature.com/jid/journal/v122/n6/pdf/5602371a.pdf " target="_blank" rel="nofollow">http://www.nature.com/jid/journal/v122/n6/pdf/5602371a.pdf  http://www.sciencedaily.com/releases/2003/05/030505083821.ht   “Celecoxib seemed to increase the efficiency by which 5FU attacked cancer cells,” Wilgus said. She and her colleagues saw the strongest results when they applied 5FU and celecoxib at the same time. However, for unknown reasons, the addition of celecoxib caused intense inflammation and irritation of the mouse skin—that’s why the researchers decided to treat one group with 5FU in the morning and with celecoxib several hours later.  The researchers originally thought that the anti-inflammatory properties of celecoxib might decrease 5FU’s side effects. “But celocoxib’s ability to act in combination with 5FU as a chemotherapeutic drug may be more powerful that its ability to inhibit inflammation,” Wilgus said. “This could be why we saw increased inflammation and redness in mice treated with both drugs at the same time. We didn’t see that in the animals treated with 5FU in the morning and celecoxib later in the day.  “But giving the drugs at different times wasn’t quite as effective in decreasing the number or size of tumors,” she continued, adding that celecoxib has no known side effects when given alone as a topical cream. “It still had a positive effect, but the results weren’t as strong.” The number of tumors decreased nearly eight-fold in the mice treated with the combined drugs, and just two-fold in the mice treated with separate applications. Tumor size decreased with both regimens, although slightly more with the simultaneous application. “Therefore, 5-FU/celecoxib treatments were almost 70% more effective in reducing tumor number compared to 5-FU alone. ”  http://www.nature.com/jid/journal/v122/n6/full/5602371a.html " target="_blank" rel="nofollow">http://www.nature.com/jid/journal/v122/n6/full/5602371a.html   http://www.nature.com/jid/journal/v122/n6/pdf/5602371a.pdf " target="_blank" rel="nofollow">http://www.nature.com/jid/journal/v122/n6/pdf/5602371a.pdf  Lastly, I am not a Dr or am dispensing any medical advice.  I am only sharing my experience and the research I've found on the internet.   My routine is effective and safe for me but may not be proper for you or your condition. In all cases consult your Dr and stay out of the sun and advise others to do so as well! Best wishes!   Jef1963 Fri, 01 Feb 2008 00:00:00 GMT I was unable to find celecoxib creme in any form.  I am taking 3 x 200mg a day of Celebrex to coincide with applications times (twice) and a dose 6 hours after the AM application.I am certain that oral Celebrex gives the synergy stated in the research due to the vastly higher irritation.    Additionally, in the first 10 days of 5FU alone, I seemed to have peaked on darkened lesions forming, surfacing and dying in the first 6-7 days.  (I have very fast, high metabolism).However, adding the Celebrex created a new series of these lesions as well as the 100% correlation with the stated research. http://www.sciencedaily.com/releases/2003/05/030505083821.ht   “Celecoxibseemed to increase the efficiency by which 5FU attacked cancer cells,”Wilgus said. She and her colleagues saw the strongest results when theyapplied 5FU and celecoxib at the same time. However, for unknownreasons, the addition of celecoxib caused intense inflammation and irritation of the mouse skin—that’s why the researchers decided to treat one group with 5FU in the morning and with celecoxib several hours later. The researchers originally thought that the anti-inflammatory properties of celecoxib might decrease 5FU’s side effects. “Butcelocoxib’s ability to act in combination with 5FU as achemotherapeutic drug may be more powerful that its ability to inhibitinflammation,” Wilgus said. “This could be why we saw increasedinflammation and redness in mice treated with both drugs at the sametime. We didn’t see that in the animals treated with 5FU in the morningand celecoxib later in the day.  “But giving the drugs atdifferent times wasn’t quite as effective in decreasing the number orsize of tumors,” she continued, adding that celecoxib has no known sideeffects when given alone as a topical cream. “It still had a positiveeffect, but the results weren’t as strong.” The number of tumors decreased nearly eight-fold in the mice treated with the combined drugs, andjust two-fold in the mice treated with separate applications. Tumorsize decreased with both regimens, although slightly more with thesimultaneous application.  Jef1963 Fri, 01 Feb 2008 00:00:00 GMT One last tip.  Butterfly swimmer is correct about this.  The Efudex does gather in the crease of the nose.  You want the medicine to get there, realize that sunglasses concentrate the sun there by reflection so you don't want to not put medicine there.  Put it on so it vanishes like everywhere else then after waiting about 30 minutes run a Q-tip gently through the crease to remove any excess.When you apply Efudex the idea is that you always apply sparingly enough that the creme vanishes.  If it's still white, it's too think and too strong.One more thing for men, although shaving may be the last thing on earth you'd like to do you want to shave as it prevents fosse action around each whisker.If you've ever deep powder skied, fosse is that hollow area around tree bases where the snow is absent.  When doing efudex is a minor gathering place for an unnecessary concentration of the medicine.Use a new razor each time and the only thing I've found that actually feels good is the Aveeno Ultra Calming Shave Lotion with Feverfew and no fragrance.  I found it at wal-mart so it should be available everywhere.  Jef1963 Fri, 01 Feb 2008 00:00:00 GMT Jef1963 -Some really good info, but if you noted my post earlier, I am post TX on hands and arms and now entire top of arms scabbing over and so tight it really is painful. Aquaphor or Vaseline are fine, but painful to apply with hair on arms with so many enflamed areas. I know face treatment is different, but same chemo, so how long before the inflamed skin and erosion starts to calm down?? Also have had some "experts" say let the erosion stay dry and not to lubricate too much so healing will go faster.  Does this make sense?  Seems new skin is growing back at same rate either way, right?Whitey whitey1 Fri, 01 Feb 2008 00:00:00 GMT The information I received from my dermatologist, pharmacist and package enclosure was only a two hour wait after application of Efudex.And either vaseline, aquaphor, or cetaphil lotion.  Nothing else.  SpankyB Fri, 01 Feb 2008 00:00:00 GMT Please indicate where on the insert is reads "two hours". http://www.valeant.com/fileRepository/products/PI/Efudex-40_ The only verified information I have is by calling Valeant's 1-800 number where I was told 3 hours and only Vaseline which is 100% identical to white petrolatum, the base for Efudex.   Jef1963 Sat, 02 Feb 2008 00:00:00 GMT Whether healing goes faster or not is hard to say.  However, I recently had a mole removed via scapel  and was to keep the stiches and entire area covered in Vaseline until the stitches were removed and for a week after by my derm.Skin cells grow from the inside layer out so I don't think whether the outer layer is wet or dry matters as to rate.  However, if you have pain that may affect your ability to complete the treatment (mine was, once on the celebrex + 5FU ) then vaseline was the only option.Call Valeant, and then relay to your derm the info. Here's a point, the average derm has to know and fix 1000 different diseases.  You have 1, become an expert on your affliction.   I think the amount of disinformation and ignorance in the community (not just here ) is outstanding. One example is the bloodroot guy that believes he caught cancer from someone else or the flax seed cures cancer guy. If either of these were true they would be on the front cover of Time and Newsweek like Bruce Springsteen was back in 1975. Jef1963 Sat, 02 Feb 2008 00:00:00 GMT Your discussion of learning as much about your condition and not just relying on your Dr. is a very good one and often not appreciated enough.  On the other hand, some of these health boards have very poor and even dangerous recommendations, so do complete research.At any rate, my acute reaction to 5-FU treating AKs on my arms and hands is finally susiding, and honestly the cocoa butter cream really worked the best to "calm" the nerves and soften the erosions.  I literally poured it on this last week.  From my elbows to wrists were 50 to 70 percent inflamed.  That's great stress on the imune system and I really had a tough time the week after 28 days of 2 a day application.  Hopefully no skin infection and this will continue to heal.This is how the arms looked yesterday:http://i31.tinypic.com/2mez4ee.jpg Regerds, Whitey  whitey1 Mon, 04 Feb 2008 00:00:00 GMT Yes.  There is a lot of rumor and false information that get propagated on the internet.  Case in point is the 2 hour recommendation above where a post reads "2 hours" is on the package enclosure.   I followed up by posting a link to the insert.  I am unable to find ANY reference to absorption rate, or any time interval where it's recommended to apply any product or a recommendation of a product. Again, I ask everyone to verify by calling the 1-800 number themselves.   Jef1963 Tue, 05 Feb 2008 00:00:00 GMT I am using the cream base, and the directions say not to put anything else on the skin.  So far I am only on day 7, so maybe I am not experiencing the full extent of the medication.  The doctor did not say anything about treating in combination with other medications - perhaps I am being too trusting about all this, but I feel my doctor is the expert and should know all the info.  She is a skin cancer specialist.  I would rather go along with her recommendations than find numerous conflicting information on the internet - which would drive me crazy!  Alwaysinthesun Tue, 05 Feb 2008 00:00:00 GMT My comments are related to the healing after treatment (TX).  I used 5-FU on hands and arms 2x a day for 4 weeks.....big doses of chemo.  During TX it is suggested you do not use moisturizers, but my doc did give me Betamethasone Dipropionate, steroid cream and I used it only when the pain was too much.  Now the burning is really intense and so I was posting for suggestions for releif.  Good luck, and hang in there!  Whitey whitey1 Tue, 05 Feb 2008 00:00:00 GMT Allwaysinthesun,"so maybe I am not experiencing the full extent of the medication"After 7 days you won't have the 5-FU destroying the tissue yet, so the side effects are going to be just red or pink areas and some "stinging".  I was discussing the healing process after treatment (TX).  After 2 times a day TX for 28 days may arms and hands were "raw" and screaming.  My posts were asking for suggestions to help the pain and speed healing.  You may not have to do as much chemo as I did, so hang in there.  Good luck!  Whitey whitey1 Tue, 05 Feb 2008 00:00:00 GMT Agreed ! I strongly advise following your Dr's directions but just as well I advise that you learn as much as you can about it and relay that information to your Dr.Is your Dr aware of the new research and the synergy provided by Celebrex? The treatment is 70% more effective with it.Additionally, you should (as should everyone) on this treatment verify any information they are considering with the manufacturer.There are people recommending solutions that are certain to aggravate and burn Efudex treated skin.  They contain many chemicals and irritants.However, the same soothing relief you receive from a new application of Efudex comes from the white petroleum base that is 95% of the creme.To the best of my knowledge, Valeant will only recommend white petroleum jelly (Vaseline) to be used after a 3 hour wait and on top of the Effudex when irritation, pain and tightness become an issue. (and they will).Any of these other solutions may cause harm and any other interval may reduce the effectiveness.    Jef1963 Tue, 05 Feb 2008 00:00:00 GMT Thanks Jeff1963 and Whitey1!I appreciate all your comments and they have helped me a lot in understanding what is to come.  I guess I have been hoping in vain that it can't look any worse than it does, and was hoping that this is it.  It is so hard to have such a public job, where I interact with so many people throughout the day - I work in a large retirement community (2,000 people) and I deal with the residents and their families, doctor's, nurses etc etc.  I must say that the folks who are most sympathetic are those who have gone through similar treatment, and recognize the issue immediately.  I know someone who had most of her face rebuilt - so I know that I am doing the right thing by treating it in an early stage.  Thanks for your support! Alwaysinthesun Wed, 06 Feb 2008 00:00:00 GMT Correction to my earlier post, Jeff. By package insert I meant pharmacy package insert.  You are correct that it is nowhere on the insert from the PHARMACEUTICAL company...mine is from OCEANSIDE not Valeant.  Regardless, up until yesterday (day 10) I really didn't need anything.I decided to use the vaseline and not the Aquaphor since the Aquaphor has other ingredients in it that I believe would aggrevate my skin.  The vaseline gives great relief!!   I would also like to add that I have found the Oil of Olay or Dove , sensitive skin cleansing cloths (rinsed first so the cleanser is very light) to be a great tool to wash with.  No soap, no Cetaphil...lightly going over the face with these helps to remove the vaseline and adds a bit of exfoliation.  I wait 10 minutes (killer) and apply the Efudex.  Feels good...then I wait as long as possible to apply the vaseline minimum 3 hours as you suggested.  Ibuprophen (Motrin-600mg) is keeping me comfortable as needed.These tips are going to help me complete the next  3.5 days.  We can do it people...hat's off to Jeff for posting these tips!!   SpankyB Thu, 07 Feb 2008 00:00:00 GMT Right on Spanky! I think we all owe it to ourselves and others to try to find a regimen that helps the most amount of people start and finish the treatment.When I first came on these boards I saw a lot of messages about fear, pain, and suffering and I wanted to do something about it for myself and for others by finding out as much as I could about how to get through this the easy way but still being effective.  (even more effective! )I tried to use some common sense and asked a lot of questions to a lot of experts, past users, the universities and the manufacturer.  I plan to stick around and continue to try to pay it forward by helping new users make it through the plan.I am certain it doesn't have to be as painful and traumatizing as what I believed 4 weeks ago when I first started on the product.    Jef1963 Thu, 07 Feb 2008 00:00:00 GMT Hi Whitey,I started a new thread on the post treatment that I am using.  It's going very well.    Jef1963 Thu, 07 Feb 2008 00:00:00 GMT Well, yesterday I almost quit...day 12 of 14 5-FU 2X's daily.   I was burning up.  Called my doctor and told him that I was using Vaseline.  He recommend that I try the Aquaphor instead.  Remembering what I read here I hesitated.  To make a long story short, we contacted Eucerin (Aquaphor) and the Pharmaceutical company to ease my mind.  Aquaphor is proven to be suitable for this treatment.  It does not interfere with treatment as long as you wait 3 hours before applying.  Efudex takes approximately 2-3 hours to be absorbed by the skin.Vaseline doesn't allow the skin to breathe as it acts as a protectant.  Which in turn makes it more difficult to wash.  Some people fare well with this.  I didn't, even though I was completely removing it with soft facial cloths and water. After trying the Aquaphor Friday afternoon I won't use anything else.  It is much easier to wash off and didn't keep the heat in which was HORRIBLE.  I feel wonderful and will be able to finish my treatment even though the doc said I could quit yesterday if I was that uncomfortable.  Two more applications for me.  My skin feels FANTASTIC!!I am one HAPPY, HAPPY GIRL!!!  SpankyB Sat, 09 Feb 2008 00:00:00 GMT