Efudex to the scalp …. Again
After four days of application of Efudex to my scalp I was using water to wipe off the previous application and noticed bright red blood on the tissue. I stopped treatment overnight and spoke with my MD’s receptionist. The doctor told her to tell me not to treat the area for two to three days and restart the treatment. (Twice daily x 14 days.) I restarted the treatment over Easter weekend and when wiping the previous treatment off the bleeding reoccurred. So another phone call and this time I was told to treat anyway. I am not comfortable with this at all as I have read online not to treat a bleeding area. What should I do? I have had two previous two week treatments twice daily and the results were failed treatment. I had one light treatment that was unsuccessful as well. Any advice April? Thank you!
Hi there! I see you mentioned our patient leader
, so I went ahead and tagged her so she can find this message more easily. I can completely understand why you wouldn't be comfortable treating the bleeding area. Have you considered getting a second opinion from another doctor? It may be helpful to get another perspective if you are worried. I'm sure you've already seen it, but we have a topical chemotherapy hub with a lot of great info on Efudex. Here's the link if you want to check it out: https://skincancer.net/topical-chemotherapy-guide. Keep me posted on how you're doing! -Alexa (SkinCancer.net moderator) Hello Alexa! I appreciate your reply. I’ve read all the Efudex online information at skincancer.net. They are helpful articles but not always clear, at least not to me. I didn’t find any information about bleeding at the treatment sight. I decided to continue treatment as directed by my dermatologist. I have completed three more applications of Efudex and no bleeding, hooray! I will continue on I guess unless it happens again. Then I will stop, take a break and continue on again until I have completed the prescribed treatment of 28 doses. It has been impossible to get a second opinion from another dermatologist. It is unfortunately taking a lot longer than two weeks I had planned to go through. This is my third time around with Efudex and I hate it! I have to really work on my thinking as I am afraid of the drug.
The one question I would really like answered is when you wash the cream off before another application is there or is there not 5FU still present in the left over cream that doesn’t absorb into your skin? I need CPAP at night so I apply the cream at 9am and then again at 3pm after washing with water. Then I wash again with water to remove what I can before I got to bed so I don’t contaminate my CPAP mask and headgear with Efudex. I have covered my pillow with pillowcase made of incontinent pads turned soft absorbent side out.
But I can’t protect the CPAP headgear as I can’t cover it with anything.
I have one more question. I am 76 and have received all the COVID vaccines offered in Canada to date. I am overdue now for the next dose and wonder how long I need to wait because of this Efudex treatment to get my next dose. If you can answer these two questions I would really appreciate your help! Thank you very much.
....I am so sorry I didn't see your post earlier! I hate you are having such a difficult time with this treatment. Thanks, , for tagging me!
I want to address the bleeding first. I have never treated my scalp, but I have had some bleeding with this cream. However, I never had any bleeding or severe reactions after just four days. I am glad you were able to get some advice from your doctor on how to handle that. That is no doubt a scary feeling--I completely understand your apprehension about this drug. It is such a tough treatment.
As far as the cream and your CPAP goes, it sounds like you have a great plan in place. I would definitely not use the cream any closer to bedtime than 3pm. From my experience, the cream absorbs very quickly, and the longer the treatment goes on, the faster it seems to absorb. I can't say that there isn't some residual cream left over, but I feel like that long after an application, your skin should be relatively clear of any on the surface. I would definitely check with a doctor or nurse if possible so they can address your specific question about using the CPAP. I am sure there are plenty of Efudex patients out there who are using CPAPs and struggling with the same questions.
It's been a while since I treated a large area with Efudex--before Covid. I don't know that I have heard anyone say exactly how or if the cream impacts the effectiveness of the Covid vaccines. The cream tends to do a number on me. It makes me feel less than my best--fatigued and nauseated. That being said, I believe I would wait a few months following healing when my body is back to normal--just to be on the safe side. Again, I would try to ask a doctor's advice to be sure before putting it off too long.
I hope this helps! I am wishing you all the best with the rest of your treatment. Here is an article that deals with the healing phase. It may come in handy in the coming weeks. Don't hesitate to reach out to us...we are here for you!
https://skincancer.net/life-with-skin-cancer/efudex-side-effects-tips
April, SkinCancer.net, Moderator
Thank you April for your reply. I have appreciated all the help you have given me and so many others over all these years.
What bothered me about my doctors reply to the bleeding I experienced were his seemingly contradictory replies to my two phone calls about bleeding and treatment. First time wait a few days and resume treatment. Second reply continue to treat. So which is it? When I get breakthroughs now I just wait a day and resume treatment until the next time. I am three days away from the final treatment with interruptions and am counting the hours until I can throw out the Efudex tube! The only symptom I have aside from bleeding is inflammation of the scalp. By this time the with the two previous Efudex treatments I was itchy, sore and oozing. The first two treatments resulted in failed treatment. They were followed by light treatment once which also failed. Now it looks like I am headed for another failed treatment because of the lack of treatment symptoms, and I have had it!
So I am looking to the final evening treatment Saturday, and I am wondering about cleanup.
I have always washed sheets and pillowcases, and towels in hot water in my washing machine twice and then putting them in the dryer. Is this appropriate? I cover the pillow with two incontinent pads stitched together and turned soft absorbent side out. I also stitch two more pads together at one end open the up and spread them under the pillow to protect the sheets. However I like to curl up with the duvet under my chin so it probably gets contaminated with residual efudex if there is any. I assume there is because I cannot thoroughly rinse the cream out of my hair with just water. Any suggestions? I put the Q-tips and gloves I use to do the treatment in a sharps container and when I am done I close and seal the container, label it with Efudex contamination and return it to a drugstore for disposal. But I am not consistent with disposal because I put the used paper towels for dabbing the cream off my head into a plastic bag in the bathroom, tie it up, and in the general garbage it goes. I’m just not sure what is appropriate. I don’t want my grandchildren or husband exposed to Efudex so I am trying to be really careful, almost obsessive. There are so many questions. Perhaps I should write tips when I am done for people with hair on their heads and how to survive. I wash anything I think I have contaminated with soap and water and my poor hands are dry and cracking. Sunday morning can’t come to soon.
Thank you again for your continued help! SpikeIt sounds like you are doing/have done everything possible to keep your family from being exposed. I have never had any issues spreading the cream and a good wash and dry seems to take care of my pillowcases, sheets, and quilts. I feel like you are covering all your bases.
How are you doing now? These days of healing can really be challenging. I am including an article that might come in handy as you face the next few days.
https://skincancer.net/life-with-skin-cancer/efudex-side-effects-tips
Please keep us posted on your progress! We are here for you!
April, SkinCancer.net, Moderator
Hi April, Thank you for reaching out again. Well, after 28 treatments over 20 days the only skin reaction I have so far is inflammation. Remember I was told when the bleeding started to stop treatment for two days and then resume treatment as before. I was supposed to do 28 treatments in 14 days. I have no itching, no burning, no serous weeping. Nothing like the last two times I applied Efudex to my scalp. I called my dermatologists office to explain I had completed the 28 treatments and had very little reaction. I asked if I should continue on for another week, 14 more treatments. I was told not to by his receptionist and to just come in early May for my follow up appointment. So, my third failed treatment. I did everything as before, so I don’t understand what has happened. Your words about cleaning up and trying to be sure I had not exposed anyone to Efudex inadvertently has helped me and I am very grateful to you. I phoned my pharmacist to ask about when to get the COVID booster I am overdue for. I was told to wait a month to six weeks to allow my body to recover. Maybe someone else out there will benefit from that piece of information. I also sent a long email to Bausch Health suggesting they include information about the everyday practical issues people face at home when using Efudex. I am curious what they will say.
SpikeDefinitely don't apologize! With this drug you most certainly have to do your own research, unfortunately. When we are all told different things or told nothing it all, it's very difficult to move forward with treatment and deal with side effects as they arise.
Please do keep us updated on your progress. We are here for you and we understand!
April, SkinCancer.net, ModeratorHello. I saw my dermatologist about a week after the last application of efudex, and finally had a really helpful discussion with him. Each of the three efudex treatments have resulted in fewer side effects that I thought were failed treatments. Actually, the AK’s were disappearing due to the treatments and efudex doesn’t bother healthy skin, so fewer side effects. However, there have been three, then two stubborn spots that needed more treatment. The dermatologist was really pleased with the results this time. One area is being particularly stubborn and there is a scab there. He prescribed Fucidin twice a day for two weeks to get rid of the scab and ensure healing. I realize Fucidin is an antibiotic but it also heals skin really well, much better and faster than all the other over the counter ointments available. He wants me to return in September for another look. He stated desmoplastic melanoma is rare and he doesn’t think it is a concern but if the area is not healed at my next visit he will do a biopsy. He answered my concerns about disposal of items used for applying efudex like gloves and q-tips and stated all of that can be disposed of in household garbage. If there is unused efudex in the tube that should be returned to the pharmacy for disposal. Sheets, towels clothes etc. can be washed with household laundry without concern of exposing others to efudex. Good hand washing after applying efudex is very important and should be done after every treatment. I have always been prescribed efudex twice a day for two weeks only because of my age, 76, and because, in his eyes he saw improvement after each treatment and felt two weeks twice daily was definitely adequate. As for the COVID booster, I could have had it anytime I chose during and after treatment because there were only two sites he was concerned about and because there were limited side effects, basically inflammation only this last time, not much if any efudex entered my body. The other thing I was concerned about was losing hair. I had my head shaved for the first treatment. That did make the treatment easier to apply and with no hair in the way it was way easier to wash with water before the next application. Vaseline based ointments don’t work with longer than a inch hair. It’s almost impossible to get out without many many many shampoos! However, I never shaved my head again and lived with it. This last time I asked for efudex cream. That was easier to deal with. My hair is thinner but it grows back! A relief! I hope writing so much will help others going forward with efudex treatment by answering questions they might have and can’t find answers to anywhere else. Again, thank you April, and everyone else for your incredible support. You’ve been there and that makes all the difference! 🥰 Spike
