July's Neuroendocrine Support Group

Just a friendly reminder that support group meeting will not be held on July1st. We will see everyone at the next support group meeting on Thursday August 5, 2021.

Hola, mi padre tiene cáncer neuroendócrino en intestino con metástasis a hígado, pulmón y húmero y padece síndrome carcinoide, Recibió la terapia con lutecio 177 dotatote hace un mes y ahora presenta crisis carcinoides (enrojecimiento, dolor en abdomen, ojos llorosos, falta de aire) varias veces al día (8) que le dejan agotado. No sabemos qué hacer. Ningún doctor nos ha podido dar un tratamiento para disminuir esas crisis y síntomas. ¿Alguien sabe algo al respecto? Gracias

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Hello @marifersitacastro,

I am glad that you are seeking out help for your dad as he deals with NETs and carcinoid syndrome as well. Here in the U.S. carcinoid syndrome that you describe is often treated with monthly injections of either Lanreotide or Octreotide. I recommend that you post this question in another NETs discussion group. Here is the link, https://connect.mayoclinic.org/discussion/welcome-to-our-new-group. You will reach more people with NETs in this group.

Here is another discussion group that talks about carcinoid cancer of the liver, https://connect.mayoclinic.org/discussion/carcinoid-cancer/. Perhaps you can find some more information there.

Is your dad able to come to the U.S. for a consult or for treatment? As I recall, you live in Mexico, and you mentioned in another post that treatments for this rare disorder are not as readily available there.

If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona, and Florida can be found here http://mayocl.in/1mtmR63.

I look forward to hearing from you.

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