Sirolimus or Rapamycin

I am 38 years post liver transplant. I have lost count on how many Mohs surgeries I have had. They have all been squamous or basil cell. If you get them taken care of, you will have no problem with them. I tell people if you find something new and it is tender, get it looked at. There is no certain way they look. I have had everything from bumps, pimples and scraps. Just because it looks different, it can still be something that needs to be checked. Best wishes on your transplant journey.

I want to add that my doctors have not talked to me about changing my meds.

I am halfway through my 3rd year post transplant of a kidney. For the first or sfew months I was taking both Cellcept and Tacrolimus. Then they stopped the Cellcept and it was only Tacro for a few months. Then they started sending me to a dermatologist for full body checks every 3 months. At the first check I was found to have a malignant melanoma in the middle of my chest. It was still in situ so it was pretty easily removed.. They also switched me to Sirolimus and stopped the tacro. They also added Prednisone. So far no other malignancy has shown up anywhere else and the Sirolimus is not been a problem.

Thank you so much @rachel5239 and @m1rmiller You both provided excellent information!
When I was examined by the dermatologist, he said everything looked great. The next day, I asked for the Physician Assistant to biopsy two spots and they both came back at squamous and needed to be removed. Does your dermatologist use any special tool, scanner or testing to find your skin cancers, or does he just use his naked eye for your body checks? My dermatologist uses his naked eye to check and missed both squamous. I was able to feel a little raised spot. It makes me very nervous that I have to find the cancers myself.
I am currently using EFUDEX (Fluorouracil solution) on my scalp
to try to control the multiple pre-cancers on the scalp. Have you
ever used EFUDEX, blue light treatment or anything like that?
Thank you sooo much for letting me know about your experience. You both are super comforting!!

@hello1234 I use Efudex a lot. It gets rids of the little ones. I don’t think they have missed any of mine. I just call and make an appointment when I find something. I always get in right away so I guess they know who I am. I am going for my yearly checkup next week. For the first time, my tests have been a little high. Guess I will find out what they want to do next week.

@rachel5239 my doctors also just look at feel the spots. When I call them I already know it needs to be taken out. You are the best advocate for yourself. Usually when you are on the meds we are on they should know to be extra careful.

@rachel5239 Thanks so much for all the great information! It sounds like I will be using EFUDEX twice a day for 4 weeks, then he wants me to use EFUDEX once a week forever in hopes that the EFUDEX will control the pre-cancers. I think I have a few spots that need biopsies, but I am going to wait until after the EFUDEX treatment to ser what it looks like.
When you say your numbers are a little high going into your next week annual check up, are you talking about having elevated liver enzymes for the first time?

Yes my liver tests were a little higher than they should be. My tacrolimus was also too low. We decided to wait for my checkup to see if they have improved before changing anything. Using Efudex can be very painful. It blisters and burns the cancer out. It works but sometimes hard to get thru it. Quite awhile ago, I had some skin cancers on my upper lip. That was the first time I had used it. I lasted the 4 weeks but it was tough. It looked like I had a bad case of impetigo. Got thru it and it never returned. It would have been great to be able wear one of the masks we can wear now!

@hello1234 My dermatologist uses some kind of tool that looks sort of like a hand held microscope for my full body checks. I was told to get them every 3 months. Initially I also had a couple of actinic keratosis sores on the top of my head. The Dermatologist prescribed a Fluoricil cream to be spread all over my head every day for a month. Quickly the top of my head was covered with these lesions. However, within that month they had completely disappeared and for the past year I've seen no return of actinic keratosis

Thank you so much for LLC this great information @rachel5239 and @m1rmiller 😀 My dermatologist gave me Fluorouracil solution that's a liquid solution with a dropper. I think it's tough to make sure I am covering my head completely. Maybe I should ask for the Fluorouracil cream. Was the cream pretty easy to apply to your scalp m1rmiller?

@rachel5239 the whole lip thing sounds like an awful experience. (I agree about the mask!). Also, did your doctor adjust your low dosage of TAC to get you back in range? I am hopeful that your annual visit numbers are back in line and no further med adjustments are needed. Please keep me posted.