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Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH
Neuroendocrine Tumors (NETs) | Last Active: Dec 28, 2023 | Replies (42)Comment receiving replies
Thank you for sharing your experience. As I read your story it seemed just as complicated as mine.
The Sandostatin has controlled my cough and while I still feel fatigued, it is much less. You mentioned hair thinning ….it’s interesting because I noticed this too and so did my friend who is also my hairstylist.
Because I am Towards the 5th mark of treatment and have the chronic stomach pains, Just recently I underwent chest X-ray with contrast, abdomen Ct scan and guided thyroid biopsy. The nodule on my thyroid has increased its size and two small ones appeared. My liver is oversized and the radiologist leans towards the hepatocellular disease and my gallbladder has no stones, but has “slush”.
I received a call from a nurse practitioner of the oncologist department where I work (United Healthcare) and she is insisting that I go to Mayo Clinic.
My oncologist has told me that in his years of experience, I am the most challenging patient he has ever had.
My journey for the past year and the years that lead up to it, have been interesting.
My next appointment with my oncologist is on the 6th. I will know more then.
Again, thank you for sharing.
May you be blessed.
Replies to "Thank you for sharing your experience. As I read your story it seemed just as complicated..."
Hello @triveraderubio
In a previous post you mentioned that someone at your medical facility had suggested a consultation at Mayo Clinic. I was wondering if that was done.
Are you feeling better now with the monthly injections?
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Thank you for responding. Yes, you do have a lot going on, definitely more than just DIPNECH. Like you, I hear from every doctor that I am a challenging, baffling, interesting, etc. case. My son does too. We both have a rare hereditary neuropathy that causes oodles of issues too. I think you're wise to go to Mayo Clinic because you need providers that are interested in rare cases and love the challenge. Places like Mayo Clinic have also seen more rare cases and have more resources. Some doctors do not want anything but textbook cases. We are definitely not that.
I'm glad your cough has improved. To me, that was huge! It was miserable for 30 years and it's a social problem. I couldn't be near anyone with scented products, candles, air fresheners, cleaning chemicals, but often was coughing for no apparent reason. Working in cubicles was impossible. Getting an office was a blessing then remote work even better.
I also am missing some enzymes to metabolize meds properly. I always have those one in a million side effects and even ones that haven't been previously documented. Often very serious, scary ones. Plus allergies. Allergic to NSAIDs and narcotics don't work at all, just have side effects so I take nothing even after surgery. I have a great fear of meds and take no OTC meds. So I felt for you when reading about your side effects. But like you said, when you have multiple disorders sometimes it can be hard to assign symptoms and side effects to the right cause.
I hope you get some answers on the 6th and all of your issues can be resolved. Scary to have new things popping up. Yesterday, my neurologist told me she often asks God if I really need to have so many different challenges and can he lighten my load just a little? I'll pray the same for you. I always keep in mind that there are a lot of people worse off. We're still here!
Blessings to you as well.