Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Has anyone else been diagnosed with this condition?
Please share your experiences….

Thank you!

Welcome @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?

Thank 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?

It 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

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!

Thank you for your feedback @ce1b.

I am happy you obtained a second opinion.

The more we learn the better it is. This is why Knowledge is power…..😉

Be Blessed and Remain Safe!

Thank you for your feedback @amd12.

I have passion to serve the public and love sharing info!

Will continue to share as much as I can!

Be Blessed and Remain Safe!

I was diagnosed with carcinoid cancer in 2003. I am still receiving 1 sandostation injection every 2 weeks. I originally had a 'full load' in my liver and was down to around 102 - 103 lbs. My oncologist (who was great but not an endocrinologist specialist) tried to 'find the cancer' he was convinced I had. After I had to pay $20,000 for a 'special nuclear' test (which turned out to be negative), hearing the results caused me to have a very strong 'carcinoid attack' where I turned beet red from what he said. He then grabbed me and told me we had an endocrinologist who was a 'specialist' in what he thought I had. He was correct. I finally received a diagnosis a few weeks later where Dr. Vink told me I had the highest 'urine sample count' he had ever seen. He proceed to put me on a pump 24/7 with 2 Sandostatin injections every 2 weeks. My insurance screamed but it saved me along with the efforts of an interventional radiologist who clear my liver of multiple tumors. I still receive 1 injection of Sandostatin every 2 weeks. Since I have an unknown primary, I can never be 'cured'. The only place I actively feel my flushing is when it goes down my back. It is difficult in some ways for me since the Onco Started with in 2003 retired and my current one seems to rely on nuclear imaging to see 'tumors'. My primary is estimated to be very small but very productive. I try and avoid foods that create a negative reaction for me, take a ton of (recommended by the original specialist) nutritional supplements. But that is okay with me. I'd rather have more time. I put make-up on my 'red splotches' on my skin and try to think positive. The Onco practice I go to really does not have a Carcinoid Specialist but my primary care doctor makes sure I stay breathing. Years ago there was a support group here but it no longer exists. There are 2 of us 'long-term' breathers & we get together frequently. It really helps to have a sounding board. Also I must put a disclaimer that 'I apologize if I have posted this before, I've had a couple of strokes & have 'new info' memory issues. Everyone eat healthy, sleep, walk, and try to STAY POSITIVE! Sending hugs to all!

I forgot to add that the youngest carcinoid patient I have met & briefly know was a young teen, around 15, who lived in a rural area (at the time), Yorktown. My attempts to keep track of her have not been successful. I hope if she is now an adult, she is healthy. I think of her so often.

I was diagnosed with this rare condition 6 years ago . I had a persistent cough and got out of breath easily . After a lung biopsy , I was diagnosed with multiple carcinoids . I have been in the care of excellent doctors at Princess Margaret Hospital in Toronto , a world leading cancer hospital . I was told no treatment, just Ct scans and X-rays every 6 months to monitor these carcinoids . Several doctors assured me this is a very slow growing condition , and the better of all possible cancers , with excellent prognosis and long life . Three months ago , they noticed one of the carcinoids started to grow . After much deliberation, they suggested I remove a lobe of my lung . They told me I could do it now or later in time . As I am 70 , I chose to do it . It was a very unpleasant surgery , but it is done and 3 months later I am perfectly fine . I will have to continue to monitor the other small carcinoids the rest of my life . Hopefully , what they told me is true , that these carcinoids rarely spread ,and only grow at a very slow rate . They told me I have many more years to go . I would love to hear other experiences.