I am 75 and have carcinoid tumors NET in lungs

@aprils1957 So you are now with Dr. Pommier? I'm a bit confused. Is Dr. Pregna an oncologist at OSHU?I am with United Healthcare and am able to see Pommier, but because Oregon Clinic no longer takes that insurance, I lost my pulmonary specialist. As a nurse, do you think healthcare has gone downhill because of Covid? I know many seasoned nurses have quit and are being replaced with nurses not well trained. My nurses in the hospital were fresh out of school and already on the cardiac/pulmonary surg ward. I saw quit a few HIPAA law violations while I was there, as well as in Providence ER. Gabapentin was tried on me, but I could not tolerate side effects either. Wondering, are you on Octreotide?

I’m glad you found someone who understands nets. That’s actually the reason I went to memorial Sloan Kettering for a second opinion, as a world class cancer hospital. My lung tumors were found incidentally when I was having a scan of my heart. So the local cardiologist referred me to a local general pulmonologist, who didn’t seem concerned, but thought maybe it would be wise to do a biopsy. This was all so new to me, and Memorial Sloane Kettering is within easy reach for me, and with one phone call I had an appointment at the end of the week with them. Point of reference, it took me three months to get an appointment with the local pulmonologist. By the time I saw the MSK doctor, he had reviewed my scans and test results and already suspected it was nets, which I had never heard of. He’s very good. So I trust him to monitor it. The thing is with DIPNECH, you can’t remove all the lumps and bumps and tumorlets or you won’t have any lung left. But because the largest one lit up in the PET scan, and there were also two smaller tumors in the same lobe, he deemed it best to remove that lobe, and I’m glad he did. No lymph nodes were involved, it was typical, and he just watches for changes. I just wish I had a local pulmonologist who knew something about nets to ask questions etc. I have a scan coming up in early May so I’ll see how things are going. For sure if there are any changes, I would see someone else. But I think if there were any changes, my MSK doctor would refer me. The problem is finding a lung net specialist. I actually consider my MSK surgeon pretty much a net specialist, but his specialty in the field is oncology/surgery. There are more specialists for GI nets from what I understand.

@nannybb yes , you are right. I am a healthy active person , never smoked or drank . About 9 years ago I had a cough that didn’t go away. Several doctors told me it was COPD or a virus I contracted during one of my travel trips. Then one doctor suggested a scan and a biopsy . That’s when I got the news. Interestingly , my mom always coughed , since I can remember. Never had it checked out and died from heart at 93. So is it genetic???? I’ll never know .

@rogo Interesting about your mother's cough. My mom had one too. Non-smoker who died of a not so common form of breast cancer (which her mother had as well) It presents on the outside of the nipple as a sore. My grandmother had dementia when she first showed signs. Her doctor told our family to just do nothing...let her die of it. As a family, we decided to get a radical done on her, and if she died on the operating table, that was how it should be. When my mother was diagnosed, she only had one removed. It came back after my father passed. She declined chemo until the very end. By then it was too late. Now my sister has consistently been coughing, and was diagnosed with possible COPD. She has a lot of scented candles in her home, which I have heard are dangerous. I really want her to be tested for possible NETs. I just know she will brush me off. It would be nice to know if anyone else in my family had NETs and was undiagnosed before it turned into what they eventually had. Again, I amazed at what you have been through !

@nannybb
Speaking of scented candles, I was so sensitive to fragrances, chemicals, everything, it was a nightmare with the coughing. Again, a social problem. Octreotide not only made that so much better so I can go to the movies, church, meetings, etc. like a normal person. It also improved my animal allergies sooo much that I can now pet animals that I love for the first time in my adult life. I was allergic to the entire animal kingdom. Octreotide can suppress some hormones like insulin but also histamines. The first med that has ever given me a beneficial side effect. Octreotide has been life changing for me in a good way!

@californiazebra Do you ever watch podcasts? I've been watching Diary of a CEO. He has some really interesting people on who talk about all kinds of issues...mostly related to health., like my comment about candles.
So you are able to socialize again. That is great! Having you say there is a histamine component makes me a bit nervous. I have dry eye syndrome. My eyes can not get any drier, I'll be blind. Seriously. 😳

@nannybb
I have extremely dry eyes as well. Did octreotide make it worse? I don’t know. My optometrist told me to try refresh ointment at night, just a dot on finger to inside lower eyelid not the blob suggested. Haven’t tried yet but will try one eye first in case it blurs vision for a few hours. I have insomnia so want to be able to see if I can’t sleep.
Not familiar with that podcast.

@californiazebra I'm sure the idea of taking supplements does not thrill you, but my eye doctor put me on some that I think have helped. I'll list them, but again it may be of no interest to you. I DO have to drink a lot of water with them.
* Nordic ultimate Omega D3 minis
* Hydroeye
I also use an eye lid scrub ( which I know helps me) OCu SOFT Lid Scrub original. I use it in the shower and Oasis eye dropswhen I get out. I can get all of these on Amazon. Lastly, eye patches you warm in the microwave I use at night. The brand I like is Bruder...also Amazon. I'm sure you can 👀 how very dry my eyes really are. Oh, and I drink carrot juice. The end.

@nannybb Just had a liver debulking with him and was discharged yesterday. Dr Pegna is a top rated oncologist who specializes in Nets. I am lucky to have him in my own town. I changed to Humana insurance from Providence so I could see him.
As a nurse I think healthcare has gone downhill because of many factors, ----money is the top one... ---We do not need insurance companies to dictate where our monies (collected from us through the years) are being spent or to tell us they will decide who we can see and whether or not we are "covered". I do not believe covid had much to do with this it has been a " slow growing tumor "in our system for a while now. Somewhere along the way we lost control of our voices and gave it over to people trying to find any reason to deny us our benefits.. Thats just my two cents on the political money side of things. I am not on any treatment now I will have follow up in a couple weeks so we can move forward.

@rogo
Are your scans with contrast ?
I was provided with the same information