i am taking the shot "L"

a new scan next week to see how the shots were working
The shots only thing discussed with my carcinoid tumor in the mesentery

no, onlu shots said radiation was afraid could not reach

Morning, My stools were soft and grey after the first shot but once I started taking Creon with every meal I returned to normal. Only had 2 shots so far but all has been good. Oncologist appointments have been at the VA (very good and helpful) who then referred me to Dana Farber to see a NET oncologist. The appointments there were ok but cut and dry. More of a tests, results, treatment, out the door see you in three months for follow-up Scan. We have now decided to see if I could get into any trials, so I have an upcoming appointment at MD Anderson. In the meantime I am just adjusting to the change in life style, what I can eat, how often I should eat and protect my immune system the best I can. Most importantly I thank God I am still upright and functionable.

Can I know how many units of Creon you take per meal? Thanks

@andre123 i do not know what that is i do not take any
my shots are all if have left will see next Tuesday's scan how it is working
Thanks

@skjones56 Are you aware of any specific trials, or are you just information gathering at this point? Adjusting one's life style can be a challenge, but sometimes it is necessary to put up your best fight. I agree with you. I too am thankful that I am still upright and functional.

no seeking info running in the dark as what could we do besides the "L" shot

@panorman3
My husband's tumor was found in 1995 between the illeum and bowell. 7 of 11 lymph nodes were malignant. 1/3 of his colon was removed. At that time, there was nothing they could do and sent us home. He lived a very normal active life. December 2022, we found out that the tumors had spread throughout his skull and body. He started Lanriotide in January 2023. The week of his shot, he isn't really hungry and has a hard time making himself eat. He takes 3 papaya pills and 2 Zypan pills with each meal to help digestion. Scans in October 2026 showed no increase in size or number of tumors. Other than not begin very hungry, he has minimal side effects. We are thankful for all of the NETS doctors at Mayo and that he continues a very normal life. We pray for all of the NETS survivors we have met on this Connection It is a tough but doable journey.

@tomrennie I recently had a video visit with my neuroendocrine specialist at the ochsner multi disciplinary center. I was told that my blood work looks fine and that I don't need another visit for a year, also im not due for my next colonoscopy until 2030. My primary physician finds it hard to believe that another petscan has not been ordered. Everything is a complete contradiction, everything. There's no way to determine where this started, it's rare. I have a cluster of nodules in my left breast which shows no changes , managed via yearly mammogram and ultra sounds for 8 years. I had no idea that I had thyroid goiters, which was discovered in a routine health checkup. Not visible at all. I was told that they were so large that the aspiration needles could not pull fluid from the goiters that were far back and that I needed a partial thyroidectomy which was performed in 2020. In 2021 I started having trouble swallowing and excruciating reflux and heartburn pain. 2 esophageals were performed within that year which resulted in what seemed to be a lifetime of being prescribed omeprazole . In December 2021 I had been woken up by the most excruciating pain like childbirth, sweating perfusively. This pain was in my lower abdomen. It's like a fever broke and the pain was gone. I showered and went back to sleep and went to work feeling fine and of course knowing I had to address this issue. I called my gi group and explained what happened and they got me an appointment that day. They did a ct scan and called me the next day and said I had to get to the hospital immediately that I had bile duct blockage. I asked several times if that incredible pain and the location of the pain was caused from the bile duct blockage. I never got a straight answer. They performed ercp and placed a stent in my distal duct. The very next morning I woke up with excruciating pain between my shoulder blades. I called the after hours gi group, it was a Saturday and was told that I needed to get to the emergency room immediately that my pancreas needed to be arrested. Im waiting in the emergency room to have my pancreas arrested and the Dr that performed the ercp and stent placement called me and asked how I was feeling. I told him that I was at the hospital awaiting my pancreas arrest. He said oh no ms Romano you don't need to have that done. I told him that the after hour dr from his same gi group urged me to get to the emergency room. They injected me with pain medication and sent me on my way. The performing dr called me on Sunday and said to go to another hospital where he practiced to have the stent placed 2 days prior removed. I asked why not at the same hospital where it was performed and I was told that they didn't have the tool at the other hospital. Am I an idiot or what. No future appointment was scheduled or what was next. I called that alliance gi group several times. I called after researching that they were in every facility in New Orleans and surrounding cities to only realize that the same person was answering the phone. Begging for a phone call back as to what was next. I never heard from or spoke to that dr again. Off to a different hospital organization for a second opinion after researching for a Dr not affiliated with that group. I found one, made an appointment. I went to my appointment and was greeted by a nutritionist talking to me about fiber and diet. I went for my next appointment and again was greeted by a nutritionist telling me everything looks great on my bloodwork and it was a pleasure treating me??? Wth... 2 months later I received a call from the nutritionist telling me she has an appointment scheduled with the dr. It was not at the same office but across the street. I go to that appointment and it's with an oncology surgeon. Wow im thinking wth is really going on. This Dr tells me to put my ears down that the word oncology is scary but don't worry that I don't have cancer. He proceeded in telling me that I have a hernia and my gallbladder needs to be removed. Before my surgery so many tests were performed including barium. I asked him how did he get involved with me , like where did he come from. He said the Dr's office where the nutritionist was they put me in a clinic and he was the man with the plan. I never even met the second opinion gi Dr. This is all in the order im explaining. It was and still is beyond ridiculous and absolutely unbelievable. Ok so the gallbladder is removed but the supposed hernia wasn't touched . 3 weeks later I am at work and here comes the excruciating pain again. Well I know it's not my gallbladder because I no longer had one. My coworkers called an ambulance and it was kidney stones. More stents removed and replaced with a gi Dr that was assigned to me not the one I made the appointment with that I never met. I was told that my pancreas was covered with tumors and that we are going to keep an eye on them. They were flat and we will keep an eye on them making sure they don't raise. I asked how and what tests are done and he said stool samples. I had to ask him when we were going to do the stool samples and he then ordered it. Do you know the lab company lost my stool sample. You can't make this type of bs up. My next visit with this Dr he's telling me everything looks fine. Excuse me Dr how about my pancreas covered with tumors. He said oh there are no tumors that it was inflammation. Wth. So much more in between. Moving on to my third opinion, third hospital. Colonoscopy done, a polyp was removed. I get a phone call from the doctor apologizing for removing what he thought was a polyp was a neuroendocrine tumor. I just wrote a book. I really hope you read this. Thats a whole bunch of some kind of bs. Please help...i couldn't even get a patient advocate to call me back...this is how my treatment is going

Wow, so sorry we must be our own doctor, check as many places to get some kind of answers, my research is that it is hard to find a good doctor who understands. Lord be with this patient and help get the plan perfected, In the Holy Name of Jesus, Amen