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Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH
Good morning. My prayers and blessings to all on this page of interest.
This is a new journey for me. Underwent a lung biopsy due to chronic cough, shortness of breath and many long lasting episodes of bronchitis. The biopsy revealed Carcinoid Tumorletts (slow growing cancer) related to DIPNECH. I always thought my chronic cough was due to asthma, but it was not. I did research to understand the diagnosis on this very rare disease; especially in the lungs.
After the biopsy, I was prescribed Trelegy Ellipta and steroids, but these medications did not suppress symptoms. I searched for an Oncologist who studied my case for a while, discussed amongst other colleagues, and ran a series of tests. After several discussions of alternative treatment, I am to start treatment with Octreotide Injection every 28 days.
Hopefully this will suppress the cell growth and improve symptoms.
Be Blessed and Remain Safe.
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This is @amd12. I wasn't actually diagnosed with DIPNECH, but I was told that I seemed to be at risk for it. So far, it hasn't developed.
@triveraderubio , good for you to be so thorough in your research and reaching out for as much information as you can get. Hope you will share what you learn with others. Best of luck with the Octreotide!
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2 ReactionsIt is my understanding that you need to understand the cellular structure of the problem and if the cell structure is poorly defined or well defined. This would determine the course of treatment. And it’s important to have someone that is intimately familiar with the disease to make that judgment.
That being said, after you find your expert it is equally important to trust in the direction of treatment so that you can continue to live your best life. As the disease is hormonal try to eliminate the stress in your life.
I have found that meditation, mindfulness and positive attitude has helped me on my lung NET journey.
Yesterday I had my second opinion on my problem. I came away with a thorough understanding and prognosis. Where before I was just going through the motions on my radiation & chemotherapy treatments.
Know you can live a long and productive life with this disease so choose to make your life story an epic one.
Be Blessed
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9 ReactionsThank you so much for your reply!
The oncologist made me aware that DIPNECH is a very rare condition, and my case is challenging.
He detailed the avenues available for treatment. However, Octreotide would be the first step, for six months, hoping the medication will suppress growth. I am always open to several other opinions as this is so new to me and symptoms are challenging.
Thoughts?
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3 ReactionsWelcome @triveraderubio
As you likely know "diffuse idiopathic pulmonary neuroendocrine cell hyperplasia (DIPNECH) is a rare and poorly understood lung condition that is characterized by the abnormal overgrowth of certain cells in the lung (called pulmonary neuroendocrine cells) that receive signals from nerve cells (neurons) and produce hormones."
Read more here https://rarediseases.info.nih.gov/diseases/10780/diffuse-idiopathic-pulmonary-neuroendocrine-cell-hyperplasia
@amd12 has also been diagnosed with DIPNECH and may have some experiences to share. Other members like @char1962 @gulzar @carolc66 @tomewilson have experience with Octreotide injections and can share their stories and tips.
Is the oncologist that you are consulting with experienced in neuroendocrine tumors?
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6 ReactionsHas anyone else been diagnosed with this condition?
Please share your experiences….
Thank you!