My dermatologist has suggested and prescribed the above medications for my face and neck for my ongoing battle with actinic keratosis and squamous cell carcinoma ( 6 mohs surgeries). Has anybody used this treatment for their skin? From what I read, it is a topical chemotherapy. It causes redness, facial peeling and supposedly will ultimately prevent future moh's surgery.
Are there any contraindications to those with CLL?
I am wondering if my dermo is just tired of freezing and taking biopsies of areas of my face and neck every 3 to 4 months !!
I have contacted my CLL doc for advice but I always appreciate information from those dealing with Cll! This is a knowledgeable group!
I am W & W 7 yrs. WBC 131, RBC 4,45, Hgl 13.2n Plts 150, Neuts 2.64. Mutated. 14 Q interstitual deletion, 2/18 translocation.
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Claybuster
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I haven't but 2 aunts of mine used it. It kept the skin things from growing, so they didn't need to keep getting them cut off. They needed to wear brimmed hats in the sun year 'round.
However, those aunts weren't CLL patients. If it were me, I would seek out a "dermatologist oncologist" for at least 1 appointment (second opinion), to ask if it's the best strategy overall to use this med the way your derm is recommending. My aunts used it on specific spots that kept growing back in the same place. If you are like this, maybe that's fine. If you are being asked to apply it to a larger skin area because the growth spots keep changing, it sounds reasonable instead of having surgery. You won't know about side effects for you, specifically, until you give it a try,
A dermatology oncologist would be the one with the most experience to answer this IMO. If your dermatologist is also the Mohs surgeon prescribing the medication, or if your derm has experience with a large number of squamous cell and basal cell carcinoma patients, that would weigh more in their favor IMO.
A second opinion is always good to get. It sounds to me like preventative therapy may be less invasive and less risky overall for any highly invasive squamous cell that may pop up, to metastasize/infiltrate in to the nerve. It may be easier on you, overall, to apply the cream & have fewer doctor appointments/surgeries, instead of having to try to be seen quickly every time something pops up, then have some sort of procedure (with the infection risk even cryotherapy has). After numerous Mohs procedures, this sounds reasonable to me.
Who knows, you may be one of those that has very little skin irritation/redness. My understanding is that one starts with a small amount, gradually applying more, up to the point of redness/peeling, then backs off the amount a bit. And for skin creams that can cause peeling/redness, you don't initially apply it to damp skin since more will penetrate. You would see how your skin reacts, then slowly work up to possibly applying to freshly washed/dried skin. This is what acne patients are told about their topicals that can cause redness/peeling, and this also applies to patients on Efudex.
The aunt that lived nearest me applied it to spots only, and however she did it, there wasn't visible redness/peeling. The pictures I saw from the other aunt, I don't recall her face being noticeably red.
I’ve used it, it is effectively a chemical peel. I used it for four weeks, skin looks like you have a birthmark. When you stop the cells underneath renew and you end up with blemish free smooth skin.
There are photos on the internet.
The only “problem” I had was the red birthmark look all over my face, but hey you just ignore it!
Hi Clay buster, I've been prescribed it a couple of times, reason given there were too many to freeze. I'm not keen on the stuff as it's messy and peels the skin. Not sure why the picture is the wrong way around..sorry! The pictures show what the skin looks like at the start, at 2-4 weeks, after 4 weeks and at 6 weeks. I have to start with it again next month when it gets cooler.
Sorry, don't know if it has any contradictions to CLL or any treatment you may be having.
I use it to keep solar keratosis damage on my scalp and forehead in check. My dermatologist tells me that recent research demonstrates that it can be more effective than cryogenic treatment over the long term, if applied correctly. I switched from cryo around a year ago and so far so good. Following the instructions is super important to avoid quite painful "burns" that can result if it is applied too generously, in my experience.
I would endorse the painful aspect! I don't think I over applied but used for only 30 days - it worked BUT it tightens the skin (scalp in my case) and was very painful - kept me awake at night. BUT as I say, it worked!
I used it in the past. The 'burn' tends to spread out to any nearby faulty cells. However, as others have mentioned, it is better than excising the spot. I always find it is the wound that creates the main problem, taking a long time to heal and running the risk of an infection.
hi clay user. My dad was prone to squamous cell skin cancer and after he had one we kept it coming back for many years with efficacy on small keratoses as they appeared. It’s wonderful stuff but can be very strong. You start to get a feel for it after a while x
Like others , I too have used it, and I echo the comments to follow instructions exactly and apply thinly.
I thought I' d escaped the red peeling, but up it came. Looked as if I'd had a bad fall onto my face for awhile and everyone was asking me if I was okay--and then, wonders of wonders, it cleared and my facial skin has been SO much better since. I was on Watch and wait when I had it.
So worth doing--just be prepared for looking dreadful for awhile. A small price to pay.
I have been using Efudex as required for about 10 years. Diagnosed with CLL ABOUT 13 years ago and on W&W since then . Very important to follow dermatologists instructions to the letter ie. don’t use too much. If done regularly it stops many of these from developing. No serious side fx for me.
I've also had several surgeries for non-melenoma skin cancers and after years of walking out of the annual skin checks looking like I encountered a hive of bees I consented to the treatment. It was lengthy and uncomfortable but it's also been 3 years between then and the mohs (also my 6th) surgery I just had. I'll repeat the treatment if more pop up and it's recommended. Hope that adds to the encouragement you seem to be getting here.
I am a heavily experienced sufferer of actinic keratosis (AK). As a result, I have used just about every form of treatment. This includes Efudex, nitrogen freezing, photo dynamic therapy, and imiquimod. And they all have their pluses and minuses.
The nitrogen is the fastest, but it is really best for spot treatment. And it will leave some scarring discoloration.
Photo dynamic therapy (PDT) is good for broad area coverage, but there are some concerns about its long term side effects. Plus it seems to wane in effectiveness with each subsequent treatment.
Imiquimod works, but it made me feel very ill. The treatment cycle was slated for four weeks, but I gave up on it after two weeks. I used it only once and I won’t ever use it again.
Now to the Efudex. It is a good solution for broad area coverage. And once you complete the post treatment healing phase, your skin looks much better. The downside is you have to apply it for three or four weeks in order to get the proper depth of reaction.
There is a better option. More recently, my dermatologist(s) have added Calcipotriene to the Efudex treatment. You can even get a prescription for it premixed. And it is only necessary to apply it twice daily for four days. I have found it really supercharges the response and the results are just as good. You really need to ask about this.
Finally, all of my dermatologists are knowledgeable about CLL and my treatment. None have raised any concerns. In fact, one of my dermatologists is at MD Anderson.
Hi, Claybuster! I have used it effectively on my nose and forehead in the past. I am currently using it for 6 weeks on a Basel cell carcinoma on my leg. I also have another small area on my forehead that I will be starting treatment on soon. It works fairly well, although when I treated my nose with it she had to follow up with a nitrogen treatment to totally eradicate it. It left no marks on my nose, but a slight red mark on my forehead. During treatment there is redness and a certain small amount of soreness, but I have not experienced any peeling or major scaring from it. I hope you have good success with it!
I was prescribed Efudex five years ago. Fortunately, I only used a very small amount on a small area of my scalp because I had a reaction to it, with my throat tightening and breathing a bit difficult.
The dermatologist was surprised and said it was very unusual but I discovered later there is a contraindication between E and Allopurinol, which he was unaware of.
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