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Squamous Cell Carcinoma post transplant
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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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 Reactions@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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2 ReactionsHi @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 Reaction@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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2 Reactions@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.
@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 ReactionHi @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?
Hello,
I got a different kind of cancer 23.5 yrs post tx. They cut it out and I did 3 months of chemo , dna for that cancer is negative which is the best news but i am not sure uf it is the same treatment for ski cancer.
I did lots of research on cancer trials and data before I quit chemo after 4 cycles.
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1 ReactionHi @22shannon
Thank you for thus information! It's very nice to meet you. Where was your cancer located and how did you find it?
@hibiscus55
Hi I had 3 cm tumor in small intestine 2 .5 inches up from my colon cuasing a very painful blockage in GI track , they thought it was scar tissue at first but at 24 years out why now then found out it was cancer, It was very stresful to be in that pain knowing cancer was growing in me for 2 months before they took it out. BUt thanks to the grace of god despite being stage 3 from having ti wait so long I was still dna negative for that cancer afetr I finally got
surgery