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Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH
Neuroendocrine Tumors (NETs) | Last Active: Dec 28, 2023 | Replies (42)Comment receiving replies
Good morning. Like Mieczyslaw, I have the same diagnosis and am also taking Sandostatin Depot (Octreotide) 30mg every 28 days. For decades, I experienced coughing, shortness of breath, and constant clear mucus. The treatment has helped to improve my symptoms. However, I do have side effects from the injection: abdominal pain, headaches, digestive issues, and abdominal cramps, among others. @mieczyslaw Have you had side effects from the Octreotide? I am curious to know.
Replies to "@mieczyslaw @californiazebra Good morning. Like Mieczyslaw, I have the same diagnosis and am also taking Sandostatin..."
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@triveraderubio
I had to go back and read through this entire thread to remember what you and I discussed in the past. I see I told my story back in March so won't repeat it all. Interesting about your side effects that are different from mine though. The key ones for me are low blood pressure, low heart rate, fatigue and hair loss. Could be others, but I started on long-term breast cancer meds two months before I started octreotide so sometimes it's hard to assign blame to the right med. I will say the side effects are worth it to me because of the respiratory symptom improvement.
I just didn't realize how much my lung sensitivity to everything was due to DIPNECH. I thought it was 100% due to allergies, asthma and fragrance/chemical sensitivity and the limitations were overwhelming and isolating for me and annoying to those around me. I still have some issues, but they have really improved. Now, I can go to a movie theater, church, concert, any group activity without coughing from scented products people are wearing (no mask needed). I can go for a walk with someone without gasping for breath over their scented products. I can be part of society again. With a mask on, I was just able to pet animals on a drive through safari zoo and petting zoo as well as my son's shedding dogs for the first time in decades. Amazing! A mask was not sufficient in the past. And before the pandemic, you would have looked like a weirdo or someone with a disease if you wore a mask in public. Post-pandemic, I can wear a mask to pet animals or on a plane that has scents and animals without more than an eye roll. Yay!
I just saw my son for the first time in two years and he was shocked not only at my lack of coughing, but he said normally when he would get in the car I would question every product he was wearing to determine which one was responsible for my coughing fit. Win-win!
As far as the lung NETs/DIPNECH progression, in the 2.5 years I've been taking the octreotide, they have seen no significant growth in my 50+ lung tumors. Yay! So I will continue octreotide injections despite the side effects. I hope octreotide is as life-changing for other DIPNECH sufferers as it has been for me. They did tell me octreotide may become ineffective for me at some point, but not enough data for DIPNECH due to its rarity to predict when. I'll hope for the best!