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Dealing with Carcinoid Syndrome Symptoms
I am on a hunt to find further information and folks who are dealing with a wide variety of Carcinoid Syndrome symptoms. My local oncologist was not aware that excess mucus was a particular symptom of the lung tumor. He knew the regulars for the small bowel and so on. It was my optometrist who prescribed Miebo for the mucus in the eyes and brought relief. I am looking forward to this learning experience.
Am interested in others'symptoms and solutions, especially for those hormonal hangovers! Here is the event I will attend with zoom:
Aug 27, 2026 Thursday 1:30 PM Pacific Time "When Hormones Interfere With Quality of Life in Neuroendocrine Cancers" Register at the Neuroendocrine Cancer Foundation https://www.ncf.net/
Join Jaydira Del Rivero, medical oncologist and endocrinologist at the National Cancer Institute, for a discussion on how hormones can affect quality of life in people living with neuroendocrine cancer. Topics will include thyroid disorders, hormone-related side effects from immunotherapy, hormone replacement therapies, GLP-1 medications, and practical considerations for managing hormone-related symptoms and concerns.
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HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
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Are you receiving octreotide or lanreotide injections? Those are for symptom control and tumor control. There is also a quick acting rescue form of octreotide you can self administer when experiencing a flare up.
Are you seeing a net specialist?
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2 ReactionsYes, on both Lanreotide and Ochtreatide rescue shots.
Worked amazingly for two years and gradually less and less effective for symptom control. Works somewhat on progression which remains slow and rather low. Yes to the NET specialist once a year, at a top notch center and an optomerist who researched NETS and prescribed Miebo. Locally I am the first NET patient: Good people but new to NET comprehension and treatment.
A work in progress and working progressively and getting some positive results and hopefully even more.
Looking forward to the upcoming zoom session this Thursday..
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1 ReactionYour local oncologist should be very grateful to have you as a patient and to be given the opportunity to learn more about nets and work with your specialist.
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2 ReactionsIt is definitely a learning process for our local oncologist, palliative care and my Primary. My Primary has been with me for years trying to figure out what was going on and sent me to Specialist who could were sometimes dismissive .. She always believed me but just did not know what to do. Once we had verification, I provided her with the Healing NETs booklet for Physicians and the one for Patients. https://www.thehealingnet.org/healthcare-professional-resources
She was the one who urged me to seek additional assistance and travel as would need to be done.
We all have benefited from her belief in me and stick-to-it-ness for fifteen years of searching for a diagnosis and continued treatment.