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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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hello1234 | @hello1234 | May 31 5:27am
In reply to @m1rmiller "@dotygl I'm into my 4th yar post kidney transplant. After the first year I began dermatology..." + (show)
Profile picture for m1rmiller @m1rmiller

@dotygl I'm into my 4th yar post kidney transplant. After the first year I began dermatology full body ceck which found a malignant melanoma right in the middle of my chest. I was told that MOHS was not an option for Melanoma removal so we did it the old fashioned way with a big cut on my chest and plenty of stitches to seal it up. Post op exam showed no residual. My team switched me from Tacrolimus to Sirolimus and prednisone. I was never too much of a sun person and at almost 80 years old it has been many years since I've done anything like that. We all have cancers that start up but our natural immune system stops them. The suppression of your immune system robs you of much of that. Good luck!

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Good morning @m1rmiller
It's so nice to hear from you! 😊 Thank you so much for sharing about your experience with skin cancer and your med change.
You are exactly the person I was hoping to speak with!
I think there will be a med change in my future away from Tacrolimis too.
How are you doing with the Sirolimus and Prednisone now?
(Also, do you take any additional immune suppression or just Sirolimus and Prednisone?)
Thanks a million for sharing any information or experience you now have on Sirolimus.
I really appreciate getting first hand information from someone actually taking the drug.

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2 replies
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m1rmiller | @m1rmiller | Jun 1 2:28pm
In reply to @hello1234 "Good morning @m1rmiller It's so nice to hear from you! 😊 Thank you so much for..." + (show)
Profile picture for hello1234 @hello1234

Good morning @m1rmiller
It's so nice to hear from you! 😊 Thank you so much for sharing about your experience with skin cancer and your med change.
You are exactly the person I was hoping to speak with!
I think there will be a med change in my future away from Tacrolimis too.
How are you doing with the Sirolimus and Prednisone now?
(Also, do you take any additional immune suppression or just Sirolimus and Prednisone?)
Thanks a million for sharing any information or experience you now have on Sirolimus.
I really appreciate getting first hand information from someone actually taking the drug.

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@hello1234 Doing fine with the Sirolimus/Prednisone regime now. Only those two right now for the suppression. For what it's worth, my Nephrologist told me that there are some who advocate using Sirolimus for others because there may be some evidence that it extends life. Keep me posted and feel free to ask me questions anytime

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1 reply
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hello1234 | @hello1234 | Jun 1 3:29pm
In reply to @m1rmiller "@hello1234 Doing fine with the Sirolimus/Prednisone regime now. Only those two right now for the suppression...." + (show)
Profile picture for m1rmiller @m1rmiller

@hello1234 Doing fine with the Sirolimus/Prednisone regime now. Only those two right now for the suppression. For what it's worth, my Nephrologist told me that there are some who advocate using Sirolimus for others because there may be some evidence that it extends life. Keep me posted and feel free to ask me questions anytime

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Hi @m1rmiller 🙂
How frequently do you test to measure your Sirolimus blood level? Was your dosage adjusted frequently when you first started taking it?
Thanks a million for all the information!

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1 reply
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m1rmiller | @m1rmiller | Jun 1 5:58pm
In reply to @hello1234 "Hi @m1rmiller :) How frequently do you test to measure your Sirolimus blood level? Was your..." + (show)
Profile picture for hello1234 @hello1234

Hi @m1rmiller 🙂
How frequently do you test to measure your Sirolimus blood level? Was your dosage adjusted frequently when you first started taking it?
Thanks a million for all the information!

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@hello1234 It's included in the blood work that I do for my Transplant coordinator. Even though I only see him in person once a year now he wants me to come in for lab work every 3 months now. There hasn't been all that much adjustment to the dosage. Now 1MG/day we started with that and then went up to 2MG/day for a time and now we are back to 1MG once a day.

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ckomis | @ckomis | 3 days ago
In reply to @hello1234 "Hi @ckomis May I ask a favor? After you ask your dermatologist about Efudex, can please..." + (show)
Profile picture for hello1234 @hello1234

Hi @ckomis
May I ask a favor? After you ask your dermatologist about Efudex, can please post here with his thoughts?
I would love to get a few opinions on this strategy.
Many thanks!

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@hello1234 , sorry for the late message. I have been using the Efudex for 2 weeks. It works great on precancerous areas. Derm also said this would be the case. Though I have been using it on other areas. My face has cleared up a lot. I recommend it.

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ckomis | @ckomis | 3 days ago
In reply to @hello1234 "Good morning @m1rmiller It's so nice to hear from you! 😊 Thank you so much for..." + (show)
Profile picture for hello1234 @hello1234

Good morning @m1rmiller
It's so nice to hear from you! 😊 Thank you so much for sharing about your experience with skin cancer and your med change.
You are exactly the person I was hoping to speak with!
I think there will be a med change in my future away from Tacrolimis too.
How are you doing with the Sirolimus and Prednisone now?
(Also, do you take any additional immune suppression or just Sirolimus and Prednisone?)
Thanks a million for sharing any information or experience you now have on Sirolimus.
I really appreciate getting first hand information from someone actually taking the drug.

Jump to this post

@hello1234 , I don't know if we discussed this but I see Derm every 3 months. I also has 6-7 Mohs. My last one was Wednesday on my scalp. It was huge and deep. Took 3 re- cuts. Derm said it my grow back. If it does I will need radiation. 😵‍💫

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1 reply
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hello1234 | @hello1234 | 3 days ago
In reply to @ckomis "@hello1234 , I don't know if we discussed this but I see Derm every 3 months...." + (show)
Profile picture for ckomis @ckomis

@hello1234 , I don't know if we discussed this but I see Derm every 3 months. I also has 6-7 Mohs. My last one was Wednesday on my scalp. It was huge and deep. Took 3 re- cuts. Derm said it my grow back. If it does I will need radiation. 😵‍💫

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Hi @ckomis 😊
Thank you so much for sharing! Did you receive a kidney transplant with TAC and Cellcept as your medications? Has there been any discussion about changing your immune suppression meds ot taking Oral retinoids to try and cut downon tbe squamous showing up?

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