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Typical Carcinoid Tumor in Lungs

Neuroendocrine Tumors (NETs) | Last Active: 1 day ago | Replies (45)
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@californiazebra

Hi @cmc188
I have 50+ lung NETs tumors across both lungs. I also have DIPNECH (really rare) which causes so many tumors. Mine are very slow growing but I had a chronic cough, mucous and shortness of breath for 30 years. The tumors were discovered on my first CT 16 years ago but not diagnosed until 2020. I’ve been taking monthly octreotide for 4 years now and it has changed my life with an incredible improvement in respiratory symptoms. It has even helped some of my respiratory allergies and sensitivities. It took a few months to get there though. I have side effects but the trade off is so worth it.

I had my largest tumor (2.6 cm) destroyed with microwave ablation almost 4 years ago. I have regular CT scans to monitor the growth of others.

I agree with Teresa that you need a NETs specialist. Most other oncologists or thoracic specialists know little about NETs and it’s not treated like other lung cancers. You may have DIPNECH too given your innumerable nodules. Mine took too long to diagnose because my medical team was unfamiliar with DIPNECH and NETs. A NETs team will likely want to do a DOTATATE PET scan specifically designed to see any other possible NETs in your body.

I noticed your British/Canadian spelling of tumors and nebulizer. Are you in the US or have access to the NETs specialists that Teresa supplied?

I don’t know anything about Blushwood Berry. Proceed with caution because people can make a lot of claims about natural cures without having to prove anything.

Please let me know if you have any specific questions. Best of luck.

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Replies to "Hi @cmc188 I have 50+ lung NETs tumors across both lungs. I also have DIPNECH (really..."
cmc188 | @cmc188 | 2 days ago

Hi thank you for your reply. I am in Australia. What are the side effects you get with octreotide? I'm out of breath so much most times I have to stop walking just to get to the bedroom etc. Hence I do not go out anymore. Yes a lot of allergies to medications, dyes and colours in them. The 2 meds I take for BP and AF also don't help with my breathing. Also have carcinoma tumors 19mm which were stable in one lung for 22 years but are now on the other side 12mm. They can't use chemo they said will not work offer me a PET scan and maybe depending on the result an injection in the thigh, which MAY help to slow the tumours down. I can't deal with side effects anymore with no results. They didn't address the nodules just that I have hundreds of them and are blocking airways. I don't know what NETs are. I went to 2 different lung specialists privately who sent me to Peter Maclean the largest cancer hospital we have, who offered the injection. The past year I didn't see any doctors what's the point they didn't offer me any hope. Feel a bit of a veggie also just in the house and not able to do much or go anywhere. I did find out my grandfather died of the same thing but he was a very heavy smoker. I didn't take the covid or flu vax I avoid meds as much as possible only what I need. I often wonder if inhaling all these drugs for asthma and all the steroids has caused these problems. I am very happy for you that octreotide has worked for you. Having read about this drug it might be the one they suggested.. I read the med I have for AF I wouldn't be able to take. That's an issue. Looks like they have come up with a tablet form that would make things easier.

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