Switching CellCept (mycophenolate mofetil) for Sirolimus (rapamycin)?

Posted by hello1234 @hello1234, Oct 14 7:05pm

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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I am a little older than you (79 yrs), and only half way through my 3rd year post kidney transplant. My pressure has always been a problem as it is quite labile. I was in End stage RD for10 years before getting the transplant and at the end was taking Amlodipine, Carvedilol, and Hydralazine all together. A combination of drugs prescribed by my nephrologist and my cardiologist. Now I am only taking 12.5 mg Carvedilol twice/day and am slowly getting more stable. Tonight my BP was 127/74 with my pulse at 58. I have bradycardia also.

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Profile picture for m1rmiller @m1rmiller

I am a little older than you (79 yrs), and only half way through my 3rd year post kidney transplant. My pressure has always been a problem as it is quite labile. I was in End stage RD for10 years before getting the transplant and at the end was taking Amlodipine, Carvedilol, and Hydralazine all together. A combination of drugs prescribed by my nephrologist and my cardiologist. Now I am only taking 12.5 mg Carvedilol twice/day and am slowly getting more stable. Tonight my BP was 127/74 with my pulse at 58. I have bradycardia also.

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@m1rmiller. Wow, that's a beautiful blood pressure. Perfect! It sounds like your new kidney (and meds) are doing a wonderful job 👏

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Profile picture for hello1234 @hello1234

@m1rmiller. Wow, that's a beautiful blood pressure. Perfect! It sounds like your new kidney (and meds) are doing a wonderful job 👏

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@hello1234 Yes I'm happy with thatBP result. Also had some blood work this morning and my eGFR was 90, which I also happy about. So it does seem like the kidney is doing it's job. I do have skin camcer which showed up last year with my suppressed immune system. Unfortunately I couldn't have MOHS because it was malignant melonoma and they can't do MOHS for that one. I had a very good dermatological sugeon remove it and there was no residual so she apparently got all of it. I do a full body dematological exam every 3 months now. And they switched me fro Tacrolimus to Sirolimus and prednisone. But, I'm very happy with my life anyway. Be well yourself!

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Profile picture for m1rmiller @m1rmiller

@hello1234 Just curious- who told you that a systolic of 85 was too high for a 65 year old transplant patient? Was it a nephrologist?

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I have always had very low pressure. Any change in that is concerning. I am going to go nephrology and see what they think. Any change in blood pressure is hard on the kidneys. I have stage 3 kidney disease and have had that for years. Another reason why they are concerned about my kidneys.

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Profile picture for rachel5239 @rachel5239

@hello1234 I had my appointments yesterday and they went pretty good. I had 2 more biopsies ugh. They were satisfied with my test results. I have always had low blood pressure. In the last months it has gotten pretty high. High blood pressure can be very hard on kidneys. They said they will make an appointment with nephrology. I received a message today and they can’t get me in for almost 3 months. I am not very happy about that. Sent a message to my primary care giver and asked him if he can get me an earlier appointment at Mayo in Lacrosse, WI. I also need to have something that showed up on my mammogram looked at. Now that has never happened before. Guess I just have to roll with the punches.

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@rachel5239 had an appointment yesterday for an an ultrasound. It is not looking very good. I am going to have 3 biopsies on Thursday. I will know what is happening after that.

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Profile picture for rachel5239 @rachel5239

@rachel5239 had an appointment yesterday for an an ultrasound. It is not looking very good. I am going to have 3 biopsies on Thursday. I will know what is happening after that.

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@rachel5239 where are the areas they are doing the biopsies?

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Profile picture for hello1234 @hello1234

@rachel5239 where are the areas they are doing the biopsies?

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@hello1234 all in my right breast. My mammogram was clear a year ago. Must be some fast growing crap. I will find out on Thursday if any of them are malignant. Fingers crossed.

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Profile picture for rachel5239 @rachel5239

@hello1234 all in my right breast. My mammogram was clear a year ago. Must be some fast growing crap. I will find out on Thursday if any of them are malignant. Fingers crossed.

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@rachel5239 Please keep me posted on how you make out on Thursday. (I am going to say a little prayer that there is nothing malignant that you have to deal with). 🙏

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Profile picture for hello1234 @hello1234

@rachel5239 Please keep me posted on how you make out on Thursday. (I am going to say a little prayer that there is nothing malignant that you have to deal with). 🙏

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@hello1234 thanks for the encouragement.

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