Each persons journey is different, but the one aspect of this that seems to be common amongst many of us is having this "cream" prescribed to us without being told exactly what it is, or how severe the effects of it can be. "You may experience some reddening."
A cancer diagnosis is scary, no matter what type or how treatable it is. You're not alone.
There are links below to others who have done this, and I found myself referring to their blogs to see what point they were at on such-and-such a day. I thank them for doing their blogs as they've certainly been very useful/inspirational to me. I seem to be stumbling on new ones recently... I hope to link to them as well.
Tips
Tips
Again, the experience of some people, and myself in particular - was that the first week was not such a big deal. After that however, it was a different story...
You'll may want to lay in supplies. Depending on how flexible your job allows you to be, you will probably be spending a great deal of time at home so you'll probably be going through more groceries and other household products. It might be a good time to get to some of those projects you've been putting off, on days when you're feeling up to it.
It might be a good idea to stock up on latex gloves or finger "gloves" (for med application), a gentle skin cleanser, pain killers, anything your pharmacist or Dr. could recommend for itching, an antibiotic ointment/cream, Aquaphor (or the like) and perhaps a sleep aid. Some people have advocated baby wipes for washing skin and removing dead skin at the same time (I didn't do this so I can't say one way or another).
Makeup/ointments salves etc...
Makeup/ointments salves etc...
If you live in a metropolitan area with a pharmacy close by, you could stop by before you start treatment to meet the pharmacist and see if he or she has any experience with customers using Efudex/Carac, and what they'd recommend. I didn't have any luck in this department, but you'll be seeing a lot more people in the coming years having to do this so I'm sure pharmacists will be better versed fairly shortly.
If you are on a budget, you could probably give the latex gloves a miss, but make sure you wash your hands thoroughly after applying Efudex.
Your Doctor may or may not prescribe/offer cortico-steriod ointments and such. My Dr. did not/would not. Bear in mind that there seems to be a big difference in the way Drs. in the US operate vs here in Canada. (The medical system here in Canada makes it almost impossible to contact physicians outside your appointment time.. especially, it would seem, in larger cities)
Your Doctor may or may not prescribe/offer cortico-steriod ointments and such. My Dr. did not/would not. Bear in mind that there seems to be a big difference in the way Drs. in the US operate vs here in Canada. (The medical system here in Canada makes it almost impossible to contact physicians outside your appointment time.. especially, it would seem, in larger cities)
Perhaps this is just my experience, but don't waste your money buying moisturizers or creams to help with the dryness as they will irritate your skin. Even 99.9% Aloe stung like crazy that I had to wash it off (which was even worse) It seems like only ointment-type products like Aquaphor will not cause a great deal of pain. Your mileage may vary. I will add to this section as I go along.
Makeup and tinted moisturizers? Perhaps for the first week. After that, I could not handle anything coming into contact with my face other than water, Efudex and Aquaphor. And even that was torture during the last week or so.
The woman at the Homeopathy store near me was very sympathetic and willing to help, but everything she sold me hurt too much to use.
Calendula ointment was not effective. If other patients have suggestions/success stories, please let me know and I'll post them here to benefit others.
Makeup and tinted moisturizers? Perhaps for the first week. After that, I could not handle anything coming into contact with my face other than water, Efudex and Aquaphor. And even that was torture during the last week or so.
The woman at the Homeopathy store near me was very sympathetic and willing to help, but everything she sold me hurt too much to use.
Calendula ointment was not effective. If other patients have suggestions/success stories, please let me know and I'll post them here to benefit others.
Most of the time, I only used cool water to wash my face. Lots of cool water and then lightly patting. Again, because you are dealing with very tender skin, even "mild" cleansers like Spectra-gel sting if left on for very much time. Remember how soothing Noxema feels on sunburnt skin? Not soothing at all when you're doing this! Once I get to a certain point of healing.. maybe.
Showering
In the beginning, showering was something I dreaded as the spray, or even the water on my face was extremely painful. Eventually, it was one of few things that gave me relief. Your skin may get so dry that after a shower, you'll step out and look like you've got a gray mask on, because the dead skin is now waterlogged.
Thats how dry my skin was and the dead layer seemed to be several layers thick. I got back in and GENTLY patted, or rubbed as much of the dead skin off as I could stand - using a washcloth at first, and then my finger tips to finish off. I'm not talking about scouring..... I mean GENTLY. If there's any resistance, leave that area alone.
You'll want to use lukewarm/cool water. You probably won't be able to tolerate anything warmer than that anyway. I found that this enabled me to look more human once my face dried, and gave me a new layer of skin to attack with the Efudex.
Shaving
Showering
In the beginning, showering was something I dreaded as the spray, or even the water on my face was extremely painful. Eventually, it was one of few things that gave me relief. Your skin may get so dry that after a shower, you'll step out and look like you've got a gray mask on, because the dead skin is now waterlogged.
Thats how dry my skin was and the dead layer seemed to be several layers thick. I got back in and GENTLY patted, or rubbed as much of the dead skin off as I could stand - using a washcloth at first, and then my finger tips to finish off. I'm not talking about scouring..... I mean GENTLY. If there's any resistance, leave that area alone.
You'll want to use lukewarm/cool water. You probably won't be able to tolerate anything warmer than that anyway. I found that this enabled me to look more human once my face dried, and gave me a new layer of skin to attack with the Efudex.
Shaving
Several men have asked about shaving while undergoing treatment. I usually shave in the shower anyway as I find I get the closest shave that way and I use nothing less than a triple-headed disposable razor. I continued this during treatment and didn't have many issues other than my chin area as it was VERY sore. I found that the razor helped with exfoliation of dead skin cells. You may have to play around with different shave creams/gels as some of them can sting.
I found that Dove Body Moisture Wash (Body Shampoo) was mild enough and thick enough to use for shaving in the shower.
It may take a while, but it's possible, and if you're like me, feeling better about how you look really affects how you feel overall.
Alternatively, if you have an electric razor, you could go that route, but I'd give the "pre-shave" lotion a miss.
Questions to ask your physician...
I found that Dove Body Moisture Wash (Body Shampoo) was mild enough and thick enough to use for shaving in the shower.
It may take a while, but it's possible, and if you're like me, feeling better about how you look really affects how you feel overall.
Alternatively, if you have an electric razor, you could go that route, but I'd give the "pre-shave" lotion a miss.
Questions to ask your physician...
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| Watch for spots arising in non-treated areas. i.e left shoulder here |
- Will you be able to contact his/her office during treatment if issues/questions arise?
- How easy will it be to get appointments if necessary?
- Is it possible to book a follow-up appointment DURING treatment to monitor your progress? (Some patients have a VERY bad reaction from the very beginning and have been advised to stop by their Dr.)
- Can he prescribe pain killers/anti-itch medication or something to help you sleep if need be?
- What should you do about other spots that arise on your body during treatment? (apparently, as the Efudex is absorbed into your system, it can cause other spots in areas that aren't being treated to "pop up") I had them but didn't know thats what was causing it... should you be spot treating these areas as well?
Thank you for sharing your experience. It was what helped me get through.
ReplyDeleteThank you so much for letting me know it helped you Diane! The reason I did this in the first place was so that others could perhaps benefit from my experience.
DeleteThanks for your help Dale. I read your blog daily to compare and to know what came next. I finish treatment today.
ReplyDeleteCongrats Max! It's been a few days so I'm sure you're seeing some improvement already!
DeleteI have done the Efudex treatment on both arms and back of hands in 4 separate treatments as advised by Dermatologist, one hand, 2nd hand, left arm then right arm 3 weeks each. Back of hands were easy but arms were painful. Yesterday I had checkup and he said great on hands and arms but now do your top of head and he suggested in 2 or 3 sections rather than whole head. Based upon my previous experience 2 arms at one time would have been way too painful and limit what I could do although I did stop golfing for 3 weeks as arm was so tight.
ReplyDeleteYou appear to have done your whole scalp and face at one time. Would you do that again or split it up? I do not need to do face only top of head and I am thinking I will do top of head in one go right after New Years.
Any thoughts on what you would do if you were me?
I am currently undergoing treatment on my lower lip only. I have done this "chemo cream" every few years since the early 2000s when a dentist in Moscow, Idaho of all places said the slight, scaly dryness on my lips concerned him. He referred me to a dermatologist and they diagnosed actinic cheilitis, basically precancerous cell growth on the lips in particular. Anyhow, I was up for a second night in a row last night with searing pain in my lips that advil/tylenol couddn't touch. I went searching in my medicine cabinet again for any old medication that could help (like you, I usually dont use pain meds when prescribed, like from when my kids were born). I didnt see anything but my friends "vape pen" with some marijuana oil still left in it - I live in Colorado where it is legal but I still have not been to a dispensary - that may now change because it really did give me some relief, and I hear that certain strains are particularly good for pain relief. My dermatologist prescribed a steroid cream she said would help with the pain as well as the healing, and it didn't. Anyways, I then find your blog and I am LAUGHING so hard at parts of it, being right there with you in the pain experience (though at a much smaller lever than you) and enjoying at least finding some humor in the misery. Then in walks my 3 year old daughter who proceeds to throw up all over my bed. Not what I needed, but after I got everything all cleaned up and her asleep next to me, I finished ready your blog, continued to crack up (which literally cracked up my lips - as you noted, laughing is a mixed blessing during treatment) and fell asleep for a bit. You are really funny and your story was so helpful to read. I hope you are sharing it widely (I will) and doing well up there in Canada. BTW, I grew up in San Diego, lots of sports and beach time growing up. We did wear hats and sunscreen (maybe that is why I dont have these spots on my whole face), but not consistently enough it seems for this fair one. Also, being tan was (and still is to maybe a lesser degree) something that made us feel better about ourselves and "healthy" even. Anyhow, thanks for the great info and the laughs. Julie (Boulder, CO)
ReplyDeleteAs I brace myself to eat a sandwich while on Day 11 of treatment with Efudex on my actinic cheilitis, (basically what you had but limited to the lip area), I wanted to write and say thank you for your blog. Thank you for the big laughs you gave me last night when I woke up in pain and couldn’t fall back asleep and was looking for info online about Efudex and pain management. I had just rummaged through the medicine cabinet looking for anything that could help with the pain (all my expired meds from childbirth were gone but I did find a “vape pen” my friends left here when they visited Colorado - I think it actually helped). Your blog made me laugh out loud (which was a double edged sword as you know during treatment), and I picked it up again even after my 3 year old came in and threw up all over my bed (just what you want to deal with when it feels like someone poured battery acid on your lip).
ReplyDeleteI grew up in San Diego with lots of time outdoors/in the ocean, and while we did wear hats and sunscreen, it wasn’t all the time or reapplied consistently, and I think the sense that being tan looked good and “healthy” even won out more times than I remember. In early 2000s a dentist in Moscow, Idaho didn’t like the look of the dry skin on my lips and referred me to a dermatologist. He was right, it was precancerous skin cell growth, and that’s when I did my first treatment with the “chemo cream.” The last time I was treated was probably 5 years ago when I was pregnant with my first kid, and they used liquid nitrogen (since the chemo cream could harm the baby). I hear that is not as effective as the cream.
Anyhow, the pain this time is more than I recall from the last time I applied the chemo cream even though I don’t have fond memories. As you said, week 1 is a breeze but once you start blistering, eroding, etc. it gets rough, particularly for sleep. When I first reported the pain to my dermatologist, she prescribed some steroid cream that would help with healing and pain – it didn’t touch the pain, nor did regular Tylenol or advil. Today she prescribed Tylenol with codeine so I will have that tonight if I need it. I feel like pain meds should generally be prescribed with this chemo cream! It seems the medical community is very wary of prescribing narcotics these days, and rightly so, but when people’s faces (or lips) are literally being burned off, it should be easier to get a small prescription! Anyhow, thank you again. You are really funny. I hope life is good in Canada.
Thanks JT! Sorry for the delayed response. Actually, I was at the dermo a few weeks back to have more spots burned off with liquid nitrogen. It seems like I have a fresh batch brewing.
DeleteWe briefly discussed PICATO, which is apparently made from milkweed, (or was it Aldara? I can't remember and can't be bothered Googling..). She indicated that it isn't as effective as EFUdex. Wonderful!
As you know, sun damage is cumulative and thus the spots I'm having burnt off now are from damage years ago... even after going through Efudex treatment.
Glad you found some humour in this site. I wanted it to inform but also be a little funny/self deprecating for those that are going through treatment.
Yes, I would imagine that some cannabis strains would be better for pain, but I don't know much about it.
Hope all is well and that you're done soon!