Dealing with Carcinoid Syndrome Symptoms

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?

Yes, 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..

Your 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.

It 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.

@maeve115
How is the Miebo working for you? Are you using it for dry eyes?

@hopeful33250
Miebo has helped with Carcinoid Syndrome Symptom of excessive mucus in eyes ( also in lungs and throat) which was initially reduced with Lanreotide. As lanreotide becomes less effective Miebo was prescribed . I am not sure of how it works but I am grateful that it does. Our co-pay is sixty dollars a month,. Retail cost is a thousand dollars a month. I realize how fortunate we are to have the insurance.. Over the counter Restasis did not help. Hopefully, it may help others too..

@maeve115
That is interesting. I was not aware of excessive mucus in the eyes as a symptom of carcinoid syndrome.

@hopeful33250
This explanation is just me trying to understand the situation. Perhaps someone can explain more effectively.
As with so much with NETs this symptom is uncommon however when the tumor is in the lung hormones like serotonin , histamine and bradykinins can release into the bloodstream without liver involvement.
I have difficulty explaining what hormone does what.
Hormone-induced bronchospasm can sometimes lead to increased mucus in air ways, throat and eyes along with coughing, and asthma-like wheezing.. What a person can get is a Postnasal drip, irritation, and mucus swelling . Peptide release during flushing episodes can also trigger excess tearing or swelling around the eyes throat irritation, and eye watering . Complicated.
This situation can result in the typical Carcinoid incidents of shortness of breath and the classic NET hormonal hangover.

I wasn’t aware of mucus in the eye I also have that so and not my pulmonologist or oncologist could explain that. Good to know that now and I have mucus from my chronic cough but associated it with my sinus drainage and allergies thanks for the knowledge.

Your welcome...
So glad it helped..
Could be one or both..
My optometrist was the one who wondered as did my primary if all the mucus was related. Miebo is also given for severe dry eyes and that was the first/primary testing.. but I guess like Sandostatin was first tested for symptom control alone, the practical usage showed help with progression too.. Perhaps Miebo will become known more widely for NETs too and not just for the "pioneers" of this rather new medication.