I am 7.5 years post transplant and everything is going well except for recurring skin cancers. I have had two Mohs surgeries on my face and other stuff frozen off. I met with the transplant team last week to discuss options and none of them are perfect solutions. I'm hesitant to switch meds because my kidney function is so good. I'm on 500mg Cellcept 2x/day and 1mg Tacrolimus 2x/day. The tacro is the issue with skin cancers.
They are suggesting Prednisone which I am very hesitant to switch to. My father was a diabetic so I'm at higher risk and going on Prednisone will increase it as well and there are a lot of other side effects too that don't thrill me.
I'm fair skinned so I expected to have issues but not this soon after transplant. My nephrologist had told me to expect an 80% chance over 20 years.
Thank you and looking forward to hearing your thoughts.
Written by
KathleenMA
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I've had one Mohs procedure myself. Certainly not the most fun thing ever, so I can only imagine having more than one. Do you wear sunscreen regularly, and if so is it SPF 50 or higher? (I live in Colorado so thats what my dermatologist has recommended to me, but I imagine it might differ elsewhere and be dependent on several factors such as skin tone and level of immunosuppression).
As for prednisone, I am on that and wholeheartedly do NOT recommend it. It caused me to have post transplant diabetes, and I did not fit the profile of a diabetic before transplant. I unfortunately don't have suggestions for other solutions but I would avoid prednisone at all costs.
Hi Kathleen I have had lots of skin cancer issues over the years I am on my 3rd kidney now and it is working well. But a couple of years ago my transplant team switched my meds from tacrolimus to sirolimus which is meant to lessen the risk of skin cancers I am on prednisolone and mmf.
The skin cancer spread to my lymph nodes so I have been having immunotherapy which has had a positive effect. After 40+years on immune suppression drugs side effects are a definite. I now cover up and wear sunscreen etc and have regular appointments with my dermatologist who remove any suspect lessons.
Hope this helps and your kidney carries on working well
I’m going on 6 years now and have the same issue. My Dermatologist called and talked to my transplant Doctor and they switched my rejection medication to Sirolimus 2mg per day. After 7 moe surgery’s it’s been 3 years since I’ve had to have one. I still have what my dermatologist calls pre cancer cells that they freez off about every 3 months.
Like you, I am very hesitant to incease prednisone due to post transplant diabetes. As a fair skinned person on tacro, I too have had several skin cancers. I worry that sunscreen lotion may have its own risk and it comes off or needs to be reapplied every few hours, so I do the following:
(1) work outside or exercise in early morning preferably in shade.
(2) apply sunscreen if I must go outside during sunny hours, especially on hands and neck or other exposed areas.
(3) Wear special sun protective clothing everytime you go outside, even for a brief time. This includes hats with wide brims and/or neck protection, driving gloves, long sleeve shirts all the time, long pants all the time, etc. They can be found with SPF of 50. You can google sun protective clothing.
(4) I have noticed that I get a lot of sun while riding in a car, so don’t forget to wear the driving gloves. Of course, you also need to be wearing long sleeve SPF shirt so you don’t get too much sun on your arms while in the car.
Sun protective clothing cost more and reguires gentle cleaning and care, but better than more drugs or disrupting the delicate balance of a drug regimen that is working well for your kidney.
Thank for sharing your concern. I had skin cancer problem before transplant which was understandable since I grew up in a time period when everyone wanted to be tan to look healthy. How ironic. Today I go to skin specialist every 6 months and wear protection cream daily. My rejection medicines include tacrolimus, myfortic and prednisone. There are side effects o all but prednisone is the worst. Ended up with AVN and had hip replacement and possibly looking at another. But my greatest concern as probably many have - what is going to happen next that I do not know about. That is why this forum is so important. It gives you the information that doctors do not talk about before or after transplant. I constantly tell my doctor and nurse about the forum and try to get them to recommend it to their patients. I even copy certain responses on the forum and email it to them. Information is the key to a healthy life.
No skin cancer found as of yet but I am RELIGIOUS with sunscreen SPF 50 and higher even working indoors by a window. I also love my Coolibar clothing and hats. All medications have side effects if they do their job at protecting a transplant organ. The key consideration is the cost to benefit ratio. Unfortunately it is not possible to predict when and how or even if a side effect someone else experienced will happen to you, and that is why the only thing you can do is to try and observe any changes that took place.
Fortunately, most adverse side effects lessen or discontinue with time and dose adjustment, so try to be patient during the journey.
Thanks to everyone for your comments. I always wear sunscreen and see my dermatologist every six months. I've decided to start Niacinamide 500 mg 2x per day which my transplant team said can protect the skin from cancers. They also suggested starting sirolimus and slowly lower the tacrolimus but not fully coming off of it. They said it is a much better anti-rejection drug than sirolimus. I'll see my nephrologist in February and review everything with her. It's all very overwhelming - I appreciate your thoughts.
i also read that article and mentioned it to my dermatologist and nephrologist. Both said they had seen positive results in their transplant patients from niacidamide. Even through this research appeared in the highly prestigious NEJM, I wonder if following the subjects for 12 m wasn't long enough to see effects.
I have recurring skin cancers and found yet another suspicious lesion on my back this week. I wish there was more research available as it’s hard to make informed decisions about treatment options. I appreciate all the opinions, postings ,and personal experiences all who take the time to make entries on this forum. I have learned more about navigating transplant life here than anywhere else.
After 32 years of Kidney transplant I start to have skin cancer. I have 2 Moh surgery, and the surgery doctor advised me to take "Niacinamide" (Vitamin B3) 500mg twice a day to prevent new skin cancer.
Also I have been doing PDT (Photodynamic Therapy) treatment to kill precancerous skin cancer cell.
Another treatment dermatologist want me to try is using "Flouroracil" cream to kill skin sqamous skin cancer (2x a day for 2 weeks). I have been using these methods above to prevent new skin cancer.
Check with your transplant team/doctor and also seek advise from Dermatologist.
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