I am 75 and have carcinoid tumors NET in lungs

@californiazebra Zebra, So,So sorry to hear this. Just know I'm praying for you. When you can, please update even if it is in private message. 💕🙏🙏🙏

@jhhaas Thank you. We just found out my 12 year old grand niece has ulcerative colitis. She had been bleeding for awhile, but was afraid to tell her mother, or my sister. They are trying infusions. My father had that as well and was sick every day of his life on a sulfa drug until I got him to try a new doctor. Obviously this stuff runs in some families. I hate that she got it, and to be so young.

@nannybb
Sorry about your grand niece. Even harder to hear this stuff on younger people. 🙏

@nannybb
Angiogram looked good. A little plaque but no blockages. Doctor was shocked. He said based on what was happening this morning he was sure he would be sending me for a quadruple bypass. He said sometimes he can tell people more what they don’t have than what they do. Have to follow up with my cardiologist so maybe he’ll have some thoughts. Hope I don’t wake up that way again. Good to be home. Thanks for the prayers. ❤️

@jhhaas Thank you. We just found out my 12 year old grand niece has ulcerative colitis. She had been bleeding for awhile, but was afraid to tell her mother, or my sister. They are trying infusions. My father had that as well and was sick every day of his life on a sulfa drug until I got him to try a new doctor. Obviously this stuff runs in some families. I hate that she got it, and to be so young.

@californiazebra Just saw this while I was in another spot. So glad you are home. I sure hope you have someone who can check on you periodically through the night. I know you wanted to come home, and I totally understand, but I'm a bit surprised. Still 🙏🙏 I went through this with my father. Home, hospital. Repeat. That alone can be hair raising. Surely you will be seen promptly by your cardiologist. 💕

@nannybb
The ER doc said, “You have a complex medical history with a lot of rare stuff. Hard to know how that stuff may have played a part in this.” He was really nice but I hear they all the time so I feel like a hamster in a wheel. He told me it’s Friday so your cardiologist probably won’t see you until Monday. I called the office and was told June 10th was my Cardiologist’s first available. I told her to forget it then. The angiogram looked good so whatever is causing it may not even be cardiac related. Could by my rare hereditary neuropathy triggered something. Who knows. Just hope it doesn’t happen again. I live alone but in condos in a close knit community so lots of support if needed. Someone saw me getting hauled off in the ambulance early this morning so word spread like wildfire while I was away. Like a senior soap opera in here but a fun one. Lol

@nannybb
The ER doc said, “You have a complex medical history with a lot of rare stuff. Hard to know how that stuff may have played a part in this.” He was really nice but I hear they all the time so I feel like a hamster in a wheel. He told me it’s Friday so your cardiologist probably won’t see you until Monday. I called the office and was told June 10th was my Cardiologist’s first available. I told her to forget it then. The angiogram looked good so whatever is causing it may not even be cardiac related. Could by my rare hereditary neuropathy triggered something. Who knows. Just hope it doesn’t happen again. I live alone but in condos in a close knit community so lots of support if needed. Someone saw me getting hauled off in the ambulance early this morning so word spread like wildfire while I was away. Like a senior soap opera in here but a fun one. Lol

@azrosegoldjust wondering.... Flagstaff in Florida? I was told in July after a bone scan that the tumor in my chest was growing. I'm sure my mouth fell to the floor. My heart did. I was never told I even had a tumor to be worried about. Now I'M wondering how long it was there. Then on my post-op visit, the surgeon told me I had 3 more. He said not to worry they were small. That was not the point. I wanted to know after having a PET scan with no more tumors found, how they suddenly appeared 2 months later? Just makes you wonder. Then I switched surgeons and was told about DIPNECH, and the shots for it. I am supposing the first surgeon did not know about either. So important to go to a specialist for Carcinoid cancer. Just because they are a "Cancer surgeon" does not mean they are familiar with the protocol for NETs.

Oh my word - this is exactly what has happened to me!!!!! I changed my high blood pressure meds to help with my cough but also plan to seek another opinion soon
My right top lobe was removed in 2022 and that is when they investigated the other small 3 mm bumps. I am not getting any treatment but being monitored every 6 months. No lymph node involvement either and typical carcinoids. My next test will be at the start of May

I live in Maine and will seek another opinion in Boston

I have another question. Just curious. I have done a lot of ancestry work. All 4 of my grandparents immigrated from Barga Italy. I noticed that several cousins were married quite often in Italy

My last question. Are you of italian descent?

Please keep in touch with me as you go through this adventure