Welcome to the NETs Group! Come say hi.

I actually finished my chemo and radiation treatments and I had surgery to remove the rest of the mass that was in me. The surgeons had to plicate my right diaghram due to the cancer destroying it. I had part of right lung removed, reconstruction of my vena cava and open heart surgery. I also have a sternum lock in my chest due to the damage the radiation did to my rib cage.

In regards to the scans, I have scans done every 3 months. They were going to just continue to give me chemo but after discussing my case at a tumor board they decided to just go with the CT scans. I had a scan done last week and there was no signs of cancer however, they discovered some other issues which would explain some other complications I have been experiencing. One of the stents they put in me is blocked. I had been experiencing pain on my right side they couldn’t explain until my scan showed that one of the sternum lock staples apparently fell and is sitting in my side. They also saw that my right lung is not opening fully. I have an appointment with the thoracic surgeon in a couple weeks to discuss what was found on the scans and although it hasn’t been mentioned I suspect they will need to perform surgery again.

Hello all

Re: "come say hi". Hi, I am new here. I had an appendiceal NET removed in 2020, via appendectomy followed by right hemicolectomy (the appendectomy surgeon said he was cutting through tumor in the appendix removal). Ultimately classified as stage 3, with spread to nearby colon and one lymph node. Lots of history, but the main thing that might help others is the lesson to tell all your doctors all your symptoms. I was having my ferritin levels monitored by my sleep doctor for treatment of restless legs syndrome, and mentioned to my gastroenterologist that my ferritin had dropped below the normal range, so she started looking for a GI tumor, and did not stop until she found one (upper endoscopy, pill-cam through small intestine, colonoscopy, CT scan). That was very lucky for me, since appendix tumors not found in appendectomies are typically not found before stage 4. The other lesson I learned, was to bring comfortable walking shoes to any hospitalization that requires lots of walking for recovery. Those hard floors make stockinged feet very sore! Final lesson: do not gloat over your siblings that you have lived 40 years longer without an appendectomy than they did. As for symptoms, I have not been given radiation or chemotherapy, so all my current symptoms relate to my hemicolectomy and the loss of my ileum. I had a bad set of blood clots 17 days after my hemicolectomy in my superior mesenteric vein, portal vein, and left portal vein that shut down my colon and liver, putting me back in the hospital for twice as long as the hemicolectomy. The left lobe of my liver atrophied, but after 1.5 years of Eliquis, the clots resolved and full liver function was restored.

I’m itching all over and wonder if it’s from the tumour

@hopeful33250 @ahtaylor @joannem @tomewilson It’s nice to meet everyone. I will be happy to connect with anyone or answer any questions you have about the support group or anything else.
I am on a number of things including Lanreotide, Octreotide, blood pressure medications, Creon, Bentyl, and Xermelo to name a few. I have terrible syndrome that includes flushing, high or low blood pressure, Tachycardia, and the typical bathroom issues. I am more under control after learning from the other patients what works for them and what doesn’t.
Today has been an ok day. Switching my Lanreotide from every 4 weeks to every 3 weeks has helped a lot.

What was the rationale for switching to every 3 weeks?

Hello @quinnie2023 and welcome to Mayo Connect. I see that you recently started posting in the NETs support group. So that we can get to know you, please share, as you are comfortable doing so, a little about your experience with NETs. Is this a new diagnosis for you?

I was diagnosed 17 months ago with a metastatic stage 4, grade 2-3 small intestinal NET. Metastasis to my liver and lymph nodes. I am non surgical candidate as my primary tumor is encapsulated in the mesentery. I started monthly lanreotide shots in August of 2023. I was primarily asymptomatic but presented with what appeared to be a gallbladder attack. With further testing the primary NET was found. All in all my treatments are going well. It is hard to determine if the symptoms I am experiencing are related to the disease, the treatment or self inflicted if I eat incorrectly. I have been utilizing this resource for quite sometime and find it very informative and supportive. I am being treated at Dana Farber/Brigham & Women's in Boston.