Biopsy showed DIPNECH

I'm currently taking Lanreotide. I have taken Octreotide as well. It is so hard to separate side affects from cancer and these medicines. I really can't say with any certainty that I have had any negative side affects from these drugs. I do believe both have helped me on this cancer journey however.

@kdubbs
Welcome to the DIPNECH family as it’s rare. I have both DIPNECH and lung NETs with 50+ lung nodules scattered across both lungs. I had a horrible life restricting chronic cough, shortness of breath and mucus issues for over 30 years before diagnosis. I have been taking an octreotide injection every 4 weeks for 4.5 years and it has been life changing! My all day long chronic cough went away, shortness of breath and mucus improved. I will never stop taking octreotide so long as it works. Hard to know exact side effects because I started 2 long term breast cancer meds 2 months before octreotide and some side effects are shared. The 2 that I can say are specific to octreotide are it lowered my heart rate and blood pressure that didn’t need to be lower. It also causes blood sugar spikes after I eat. The great surprise is it has made me less susceptible to lung irritation from fragrances, flowers, etc. Even better is it has vastly improved my animal allergies so I’m able to pet and even hold animals for the first time in my adult life. I’m 66 and love animals! What a blessing! Octreotide is also supposed to slow tumor growth but mine grow so slowly anyway it’s hard to say about that.

No, I haven’t heard of octreotide through infusion. I receive injections in the upper glute rotating sides. Sometimes it’s sore for a few days but no big deal. It also tends to leave little palpable bump that also shows up on CT scans. Maybe infusion is suggested for those reasons? It’s all worth it!!! Prayers that it will be the same miracle drug for you that it has been for me. ❤️

Oh, I also suggest you hook up with a NETs specialty team (likely at a university hospital, cancer center or Mayo) that is familiar with and has experience with neuroendocrine cancer and DIPNECH. My local oncologist and pulmonologist were not knowledgeable about lung NETs and DIPNECH, but my NETs team an hour away at a university hospital works with my local oncologist so I conveniently receive my injections a half mile from home. My followup visits with my NETs team are video calls. I do see that team in person for scans and procedures.

Hello @kdubbs

I see that @californiazebra and @jlsgt have already introduced themselves to you and shared a bit about their experiences with DIPNECH. From your post, it appears that you have had symptoms for several years, but have only been recently diagnosed. Is that correct?

As you can see from @californiazebra's post, this was true for her as well. As she posted above, this would be the best time for (at least) a one-time consultation with an oncologist who is knowledgeable in both lung NETs and DIPNECH. A facility like Mayo Clinic (contact information for Minnesota, Arizona, and Florida can be found here http://mayocl.in/1mtmR63) or a university medical center in your area would be a good choice for a consultation

As you are looking for others who have this type of cancer, here is a list of other posts from members who are dealing with this same diagnosis:
https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/?search=DIPNECH#discussion-listview
What symptoms are the most bothersome for you now?

Hi , welcome to the DIPNECH club 🥴. You’ve come to the right place! I also have it, but thankfully, so far I am not on any treatment. I was diagnosed when they found a lung tumor incidentally, which turned out to be a “typical carcinoid/net” tumor that had turned malignant. Because there were others in the same lobe, they removed my right middle lobe, but I have remaining tumorlets scattered throughout my lungs. Symptoms are shortness of breath on exertion, and a sort of frequent clearing of the throat. That does not reach the level of a full-blown cough is not really a problem. My doctor does not feel I need medication/further treatment at this point, and I just get scanned every six months. Several years before diagnosis I had one bout of a really bad cough that would not clear up for months. I think if that came back again, I would be looking at treatment like you are. But the others are right that you should see a net specialist if you need treatment, especially. Not sure where you live, but some might even meet with you remotely if you were too far away. These specialists deal with our condition regularly, whereas my local pulmonologist really knows very little about it. Best wishes to you, sorry about your diagnosis, but Hopefully you can get the help you need now. Please keep us posted.

I also get a CT scan every 6 months.

Hi, another DIPNECH ‘club’ member here. My diagnosis was late 2023 and I had an ablation of the largest carcinoid in May ‘24. I have only had Octreotide infusion once before my ablation procedure. Since then my cough has been manageable with steroid inhaler, and I have had CT’s every 3-4 months that so far show the DIPNECH stable. I agree with the other members here to seek an opinion of a NET specialist. Best wishes and keep us posted.

Many thanks to each of you for weighing in. I live on the east coast, about a 3 hours drive to Duke. My pulmonologist wants me to see the team at Duke so that they can manage my care. As I received the biopsy at a hospital a bit closer to home, I'm meeting with an oncologist in the coming week (referred to me by the Dr who ordered the biopsy at the same facility). I'm anxious to learn more. The same pulmonologist who referred me to this oncologist wrote in his notes that they may also need to consider a dotate scan. I have severe obstructive lung disease. I've been taking a really high dose of Gabapentin & Lyrica, which has provided some relief. But I'm looking forward to the day when I have more improvement.

@tammyv615 can you tell me more about the infusion? I can't find much info on it, even when I use chatGPT.

@kdubbs

Here is some information about the Dotate Scan that you mentioned,
https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/
Keep posting with any questions!