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Merkel Cell Carcinoma: Immunotherapy while on antirejection meds

Posted by mkhighpoint @mkhighpoint, Oct 26, 2022

I was diagnosed with MCC and had surgery and followed with 30 treatment of radiation on the right side of my head, cheek and neck.
The PET/CT scan following radiation showed the spread to my lung, and bone.
I had a liver transplant 3 years ago and the only treatment for MCC for me seems to be immunotherapy. Has anyone gone through immunotherapy treatment while taking anti rejection ( Tacrolimus ) medication? Treatment was not started because the last PET showed no sign of MCC.
Crazy thing is I feel totally fine, plenty of energy, appetite etc.
Another follow up PET is scheduled for 11/7 to see if anything shows up. Still, I would love to have some info about immunotherapy while on anti rejection meds.
Thank You
Mkhighpoint

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 26, 2022

Welcome @mkhighpoint. I added your question to the Transplants group (https://connect.mayoclinic.org/group/transplants/) as well as the NETs group.

First I'll tag members like @angieklima @collielady and @dreams who also have experience with merkel cell carcinoma and can share their experiences with you.

You ask a very good, yet very specific question about the effect of taking immunotherapy while also on anti-refection medication. Does your oncologist communicate and coordinate treatment with your transplant team?

REPLY
1 reply
angieklima | @angieklima | Oct 26, 2022

Good news that the most recent PET scan is not showing concern. I did not have immunotherapy nor taking transplant medication however i have heard immunotherapy is used often a d assume in situations like yours as many MCC patients are on immunosuppressive medications also. If though have a very knowledgeable MCC medical team I’m sure they can offer more information regarding your concerns, you might find good research articles at Merkelcell.org

REPLY
1 reply
mkhighpoint | @mkhighpoint | Oct 27, 2022
In reply to @colleenyoung "Welcome @mkhighpoint. I added your question to the Transplants group (https://connect.mayoclinic.org/group/transplants/) as well as the NETs..." + (show)
@colleenyoung

Welcome @mkhighpoint. I added your question to the Transplants group (https://connect.mayoclinic.org/group/transplants/) as well as the NETs group.

First I'll tag members like @angieklima @collielady and @dreams who also have experience with merkel cell carcinoma and can share their experiences with you.

You ask a very good, yet very specific question about the effect of taking immunotherapy while also on anti-refection medication. Does your oncologist communicate and coordinate treatment with your transplant team?

Jump to this post

Thank you for your response.
Yes, my oncologist has teamed with my transplant doctor and will put a treatmentplan together when the MCC shows up again, my next PET is on 11/7/22.
Thanks again.

REPLY
mkhighpoint | @mkhighpoint | Oct 27, 2022
In reply to @angieklima "Good news that the most recent PET scan is not showing concern. I did not have..." + (show)
@angieklima

Good news that the most recent PET scan is not showing concern. I did not have immunotherapy nor taking transplant medication however i have heard immunotherapy is used often a d assume in situations like yours as many MCC patients are on immunosuppressive medications also. If though have a very knowledgeable MCC medical team I’m sure they can offer more information regarding your concerns, you might find good research articles at Merkelcell.org

Jump to this post

Hi
Thanks for your reply. I will check out merkel cell.org.

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wayner1 | @wayner1 | May 25 1:34am

I have a question. I was diagnosed about year and half ago with small MCC lesion on my forearm. I had surgery to remove it and had 25 radiation treatments. Everything as going fine getting energy back from radiation treatments. PET scans every 3 mo showed no metastasis but the one this week showed some irregularities with top of my right lung. My appointment with oncologist is next week to get some ideas. I wondered what they treated you with if you wanted to share it. Thanks so much and let’s all keep thinking positive thoughts for each other!

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 6 8:12pm
In reply to @wayner1 "I have a question. I was diagnosed about year and half ago with small MCC lesion..." + (show)
@wayner1

I have a question. I was diagnosed about year and half ago with small MCC lesion on my forearm. I had surgery to remove it and had 25 radiation treatments. Everything as going fine getting energy back from radiation treatments. PET scans every 3 mo showed no metastasis but the one this week showed some irregularities with top of my right lung. My appointment with oncologist is next week to get some ideas. I wondered what they treated you with if you wanted to share it. Thanks so much and let’s all keep thinking positive thoughts for each other!

Jump to this post

@wayner1, I was wondering how your appointment went with the oncologist? What did you find out?

REPLY
wayner1 | @wayner1 | Jun 6 11:05pm

I have a PET scan every 3 months. Something on the last one warrants a CT scan in a few weeks but doctor said it’s probably nothing. So far all my PET scans have shown no evidence of metastasis. So I read somewhere that you should treat cancer as a chronic disease, so I think that’s not a bad idea. Thanks for the thoughts.

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