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Liver transplant and Neuroendocrine Carcinoma
Has anyone else been diagnosed with Neuroendocrine carcinoma cancer that has also had a liver transplant in the past? If so, I’d love to hear your story and how long ago you were diagnosed and how you’re doing now. And also which doctor/cancer center you go to that specializes in people with transplant and NEC. I’m having a hard time finding a doctor that specific. Was recently at MD Anderson, but I need a doctor who specializes in liver transplants and NEC.
12 years post liver transplant and was recently diagnosed with stage 4 cancer in March of this year. I’m 33 years old.
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HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
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I am very interested in this as I am in a similar situation. I’m in a NEC support group and some people are doing well on immunotherapy treatments. While I’ve seen some indications that it is possible post liver transplant, it is more risky and hard to find available treatments. Many trials exclude solid organ transplant recipients.
Yeah I had a second opinion at MD Anderson in Houston and they said I wouldn’t qualify for clinical trials due to having a liver transplant. I was told to find a doctor that specializes in liver transplants AND NEC so we think we found the doctor I need at Dana Farber in Boston. We are heading there in September so hopefully they have better answers. It’s been so hard to find that kind of doctor
I’m on the 3rd round of my 2nd line of treatment so not quite out of chemo options yet. I saw someone mentioned 2 MDs at Mount Siani . Good luck in September. I’d be interested in hearing what you find out. I think our cases are very rare. Could you share the name of the Dr you’re seeing in Boston? You can message me if you don’t want to post it. Thanks
There is a closed moderated FB support group that has lots of good information. They do a zoom call each Thursday and every 4-6 weeks do a zoom consult with a NEC specialist from Miami. You can submit questions. A lot of people in the group have gotten valuable second opinions from him.
Good to know, what’s the Facebook group called if you don’t mind sharing? Yeah there are 2 doctors that we were told about at Dana Farber. Dr Thomas Abrams and Dr James Cleary. Good luck to you as well 🙏🏼 I’ll try to remember to post an update here after I meet with Dana Farber in Sept
High grade Neurondocrine Carcinoma Support (aggressive grade 3) This one is well run. Members only. Posts approved by moderator. Took me awhile before I participated in the weekly zooms. I thought they would be depressing but I’ve actually found them helpful and gotten reliable information. They are big on self advocacy. I think there are over 1,000 members from around the world.
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1 ReactionMy primary oncologist said I wouldn’t be a candidate for immunotherapy due to the transplant and rejection risk but the local oncologist administering my chemo had a heart recipient when he was a resident, who received immunotherapy. I have since seen some articles about it being possible
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