Squamous Cell Carcinoma post transplant

Posted by hello1234 @hello1234, Feb 8, 2024

Hi Transplant Family,
I hope everyone is well. I had my kidney transplant in July 2020. I just received a call from my local dermatologist. The spot on my face is squamous cell carcinoma. Last year, I received the same call for a spot on my chest. I went on the internet and read some scary statistics.
Has anyone experienced multiple skin cancers post transplant? Was your immune suppression meds changed or reduced? What was your experience? Did everything work out okay long term?
Thanks everyone and please don't forget your sunscreen.

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Profile picture for hello1234 @hello1234

Hi @danab
It's so great to hear from you! Thank you for letting me know about your experience with skin cancer surgery too.
Yes, my early days on the beach as a teenager was definitely a mistake! Now that I am a transplant patient on immune suppression meds, I am starting to pay the price for all that foolishness of tanning and sunbathing. Is your only anti-rejection med a low dose of Tacrolimis?

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Yes due to an ongoing tendency to a virus called parvo B19 I had a pretty bad bout of it and it caused my blood counts to get too low. So I was taken off of the other commen one I'm trying to remember the name it starts with a M so to help keep me from B19 from coming back they only have me on Tac

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Profile picture for Dana, Volunteer Mentor @danab

Yes due to an ongoing tendency to a virus called parvo B19 I had a pretty bad bout of it and it caused my blood counts to get too low. So I was taken off of the other commen one I'm trying to remember the name it starts with a M so to help keep me from B19 from coming back they only have me on Tac

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Hi @danab
It sounds like you may have been on Mycophenolate or Myfortic. My story is similar. After each infection, my immune suppression has been reduced. I currently take Envarsus XR and Myfortic. My guess would be the Myfortic may be switched after I speak with my doctor regarding the squamous.
What is your target range for Tacrolimis? Do you also have Allosure tests every once in a while?
After 7 years, it sounds like they have everything perfectly adjusted for your system. Wonderful!

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Profile picture for hello1234 @hello1234

Hi @danab
It sounds like you may have been on Mycophenolate or Myfortic. My story is similar. After each infection, my immune suppression has been reduced. I currently take Envarsus XR and Myfortic. My guess would be the Myfortic may be switched after I speak with my doctor regarding the squamous.
What is your target range for Tacrolimis? Do you also have Allosure tests every once in a while?
After 7 years, it sounds like they have everything perfectly adjusted for your system. Wonderful!

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Yes it been very stable at 1.5 twice a day. Once in a while it may get below the trough of 5-6 range at they may add an additional 0.5 but it's rare.

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Profile picture for hello1234 @hello1234

Thank you @ckomis 😊 I will definitely call my transplant coordinator tomorrow to discuss. Is there a Sirolimus blood test similar to the Tacrolimis blood level test? Are you given a target range, like our Tacrolimis?
I guess you will have both tests moving forward to make sure you are in range for both drugs?

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Yes I am on 2 week blood draw to get sirolimus levels. So far they have been perfect with the initial dose of 2mg dly.

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Hi all Transplants and skin cancer posters,
I have not been on this site for a while. I am going on 4 yrs post kidney transplant in Sept. My fight now is with Skin Cancer basal and squamous cell carcinoma. I am on Tacrolimus and Prednisone. I see regular Dermatologist every 3 months. He does cryo, scrapping, I have had numerous Mohs procedures. I also had a blue light procedure on my face which was so so painful. It helped for a while. The procedure was so so painful I do not think I could tolerate it again. My questions are; has anyone had any other alternative procedures? Also, I have read about a Transplant Dermatologist. Is anyone seeing this type of Derm? Thx everyone.

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Profile picture for ckomis @ckomis

Hi all Transplants and skin cancer posters,
I have not been on this site for a while. I am going on 4 yrs post kidney transplant in Sept. My fight now is with Skin Cancer basal and squamous cell carcinoma. I am on Tacrolimus and Prednisone. I see regular Dermatologist every 3 months. He does cryo, scrapping, I have had numerous Mohs procedures. I also had a blue light procedure on my face which was so so painful. It helped for a while. The procedure was so so painful I do not think I could tolerate it again. My questions are; has anyone had any other alternative procedures? Also, I have read about a Transplant Dermatologist. Is anyone seeing this type of Derm? Thx everyone.

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@ckomis I know exactly how you feel!
I am 5 year post kidney transplant and my basal and squamous has fired up too.
I have had multiple MOHS on my scalp and face in the lasr coupleof years. Matter of fact, I have MOHS scheduled on Thursday for another squamous on my scalp. It takes months to heal, so I dread it.
My dermatologist is recommending that I do not change my immune suppression meds. Currently, TAC and Cellcept.
He feels that he can manage what's going on with the skin. He wants me to start using EFUDEX once a week on my scalp and face for the rest of
my life.
Have you used EFUDEX cream? Has anyone in transplant or your dermatologist, discussed the idea of changing to a different immune suppression med like sirolimus?
I am afraid to change immune suppression, but I am also afraid of squamous and all these surgeries.
What is your dermatologist and transplant saying? Just stay the course for now?
I wish I could find a good solution to this too. It scares me to have all this scalp squamous.

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@ckomis Also, I forgot to mention that my dermatologist mentioned that maybe I should take oral retinoids. Did your dermatologist mention any supplements like that?

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Profile picture for hello1234 @hello1234

@ckomis Also, I forgot to mention that my dermatologist mentioned that maybe I should take oral retinoids. Did your dermatologist mention any supplements like that?

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@hello1234 wow! Hope all goes well on Thursday. I have been on Sirolimus and it did not agree with my belly. Derm wants to stay the course of cryo. I will ask about Retinoids and Efudex. Thanks for the tips.

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Profile picture for ckomis @ckomis

Hi all Transplants and skin cancer posters,
I have not been on this site for a while. I am going on 4 yrs post kidney transplant in Sept. My fight now is with Skin Cancer basal and squamous cell carcinoma. I am on Tacrolimus and Prednisone. I see regular Dermatologist every 3 months. He does cryo, scrapping, I have had numerous Mohs procedures. I also had a blue light procedure on my face which was so so painful. It helped for a while. The procedure was so so painful I do not think I could tolerate it again. My questions are; has anyone had any other alternative procedures? Also, I have read about a Transplant Dermatologist. Is anyone seeing this type of Derm? Thx everyone.

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@ckomis . It is good to her from you!
Since I did not have a dermatologist at home. I used to get scheduled to see a dermatologist " in the transplant department" during my annual chck-ups. It was a convenience that was offered to streamline the visit/appointments. He was not a "specialized" transplant dermatologist. You've got me curious! You might want to ask your transplant people if there is such a specialty.

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Hi Rosemary, the specific transplant derm was mentioned by another poster . I will be asking my Transplant Office team . Hope all is well with you.

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