Typical Carcinoid Tumor in Lungs

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.

If I had symptoms that were bothersome, like your never-ending coughing, I would be looking into it. My symptoms are not that bothersome at this point. The time may come when it becomes more problematic.

Hi - NETs are neuroendocrine tumors, formerly called carcinoid tumors. They are either “typical” or “atypical”- typical grow much slower and typically don’t spread, where atypical ones can grow more aggressively. They are different from carcinoma tumors. Most of my doctors know very little about neuroendocrine tumors, they are quite rare. That’s why people suggest trying to find a “NET specialist “. They are hard to find. I had my biopsy and subsequent lobectomy at Memorial Sloan Kettering cancer hospital, and my surgeon thankfully knows a lot about them. He does not yet recommend injection treatments for me yet. If my regular scans show changes or I start having more problematic symptoms, he would likely refer me to oncology. It’s just alarming to realize how few doctors know much about NETs. My pulmonologist had to look up DIPNECH.

There are only about 300 documented cases of DIPNECH which is why most doctors have never heard of it. There also isn’t much clinical data on it. They believe it’s underdiagnosed. I asked the head thoracic surgeon at my local hospital if he was familiar with lung NETs (yes) and DIPNECH (no). I asked him to spread the word. I am being treated by a NETs team at the nearest teaching hospital.

@cmc188
I don't blame you for not wanting side effects without any benefit. I have had so many adverse reactions in my life, I almost always say no to meds out of fear. But, I felt I had to try octreotide and I'm glad I did. I started taking two breast cancer meds 2 months before octreotide so sometimes it's hard to know which med to blame for a side effect. Octreotide caused me more fatigue (but I still enjoy my life), some hair thinning (not bald by any means), lower blood pressure (your doctor may need to adjust your current blood pressure meds while using octreotide), lower heart rate and spikes in my blood sugar. The trade off is worth it to me to get rid of most of the respiratory issues. I can still get a little short of breath when walking, but nothing like before. I can walk for 3-4 miles so long as I go at a slower pace.

I get the octreotide 30 mg injection every 28 days in my glute. It's thick so they have to do it right for it to absorb. You need a NETs specialist so they are used to giving the shots.

I have afib, but have refused meds. My cardiologist never said I couldn't take certain afib meds with octreotide. Get another opinion on that.

Inhalers over the years always made my coughing worse and didn't relieve my shortness of breath. They thought it was asthma, but it was DIPNECH.

Please don't feel hopeless. If you do, you need a different team of specialists. You said your grandfather died of this and was a heavy smoker. Did he have lung NETs or another type of lung cancer more typical to smokers because that is much, much worse. Typical carcinoids and DIPNECH are not caused from smoking. My brother had non-small cell lung cancer (not NETs) and he never smoked a day in his life, died at 48. My experience with NETs has been very different that his kind of lung cancer. He had no quality of life once diagnosed. I have lots especially since taking the octreotide injections for 4 years now. I think it was about 2 months to start seeing a benefit and a few months to get the full benefit of octreotide. You can always try it for a few months and then stop if you don't see any benefit. Side effects usually improve some over time.

Also, if you have a DOTATATE PET scan and they determine you don't have somatostatin receptors (like me), know that octreotide still works! They did say I would not be a candidate for PRRT.

If you're just feeling hopeless, staying in the house and not enjoying life right now then what do you have to lose by trying octreotide? Octreotide also slows tumor growth and you don't want the tumors that are blocking airways to keep growing.

It might be good to get a second opinion outside your current team of specialists. It probably wouldn't be covered to use a US doctor and I'm not sure what your financial status is, but it you can afford it, you might consider paying cash just for a second opinion and suggested treatment plan. DIPNECH is so rare that may NETs specialists may not even be that familiar. The NETs specialist that seems to take the most interest in it (from what I've heard) is Dr. Robert Ramirez at Vanderbilt University in Tennessee, USA. You could likely set up a video visit with him once he had the necessary records. He has several videos on youtube including ones on DIPNECH. Mayo also has great NETs specialists. Best of luck to you whatever you decide.