Switching CellCept (mycophenolate mofetil) for Sirolimus (rapamycin)?
Hi Transplant Family!
I am celebrating my FIVE year kidney transplant anniversary. Everything is going great except all of the sudden I am now dealing with lots of MOHS surgeries on my scalp and face for squamous cell carcinoma and basal cell. My doctors are discussing swapping my Cellcept for Sirolimus (Rapamycin). I wanted to see if anyone in our community is successfully dealing with these types of skin cancers and also if anyone switched to Sirolimus (or Rapamycin) and what was your experience with the switch. It makes me nervous to switch immune suppression meds since my kidney transplant is nice and stable. Please let me know your thoughts and any experience you may have with these skin cancers and possibly switching to Sirolimus or Rapamycin. Thank you so much everyone!
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@hello1234 saw doctors today. They were very adamant that I try chemo first. They are going to try meds that aren’t as strong. They want me to do 12 weeks once a week. If I can’t endure it I will stop. I figure I won’t be any worse than I am now. This cancer spreads very fast. My PET showed that it wasn’t anywhere else yet. That is the reason they want me to try chemo. I am still very unsure about all of this.
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2 Reactions@rachel5239 It sounds like you have a nice window of opportunity to hit the darn cancer with some chemo before it spreads anywhere. That's wonderful news! Also, the chemo may shrink the breast cancer or resolve it entirely. Is that what the docs are saying?
I think I if I were you, I would start the once a week treatment for 12 weeks immediately. You can always stop, but maybe the 12 week treatment will be just enough to resolve the problem. What is holding you back from starting asap?
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1 ReactionI have stage 3 kidney disease. All of these drugs can be very hard on kidneys. If something damage my transplant liver they could maybe bring it back. Of I lose my kidneys I am in serious trouble. I have been trying to do some research but the kidney thing really bothers me. The research says that doses have to managed very carefully. They will check my levels every week. If they find something, will they be able to stop it from getting worse. Guess I have to ask more questions for the doctors. The oncologist said if I don’t take any treatment, I could go for 1 to 2 years. I have triple negative breast cancer and it has a high rate of recurrence. I am supposed to have my treatment the last week in December. My husband and I have been trying to weigh the pros and cons. Again, I am 74 and I just don’t know if they can give me enough time to make all this worth it????
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2 Reactions@rachel5239. I totally understand. As we get older, all of these decisions become more difficult because many of our organs are weak.
Is there a possibility of giving you dialysis support during your chemotherapy treatments to help your kidneys clean it out?
You would need to coordinate this with both your oncologist and an excellent nephrologist so they can work together to monitor appropriate chemo doses, etc for your kidney function level, etc. It's not unusual for people to have temporary supportive dialysis to protect weak kidneys during treatments like chemo.
Are you with Mayo? It may be worth discussing this "team effort" approach, so you can protect your kidney function and also receive your chemo.
Would you consider that as an option?
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2 Reactions@hello1234 I had not thought about that. Sounds like a very good idea. I will check with my doctor. Thanks for the information.
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2 Reactions@rachel5239 Excellent! Please keep me posted. I forget.... Is your transplant team and oncologist both with Mayo?
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1 Reaction@hello1234 yes. My transplant team, nephrologist and oncologist. They are working together to find the best treatment for me. I am at Mayo Clinic in Rochester, Mn
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2 Reactions@rachel5239 PERFECT!! That's wonderful news Rachel. You are at the right place for excellent coordinated care. I am very happy to hear that you are at Mayo! Please keep us posted.
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1 Reaction@hello1234 I am very lucky. We only live 70 miles from Rochester.
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3 ReactionsDoes anyone take Everolimus? They want me to switch to that because I now have cancer and it is supposed to help.