Long Time Survivor With Concerns re Metastasis

I mand hopes et with an oncologist yesterday. My report: Small tumors in pelvic/abdominal region and "lesions" on outer edge of my liver. She is making an appointment at MD Anderson for me, with the recommendation that I consider the PRRT treatment is MDA considers it appropriate. Otherwise, she suggested starting Lanreotide. My only real symptom is extreme fatigue that comes and goes, and very low blood pressure. My seratonin level is crazy high (1370), my chromogranin A is slightly above normal, but my 5HIAA is lower than normal. Not sure what all of that means, but I will start paying attention to those numbers. I am grateful that treatment for NET is so much better than it was in 2010, when I started this journey. Good thoughts to all of you on this journey, also.

I saw the hematologist. She recommended that I go to MD Anderson for review and possibly PRRT treatment, because, she said, she does not have the original 2010 pathology report from my treatment at Mayo. My current seratonin level was 1236, and my 5HIAA test was low, which seemed odd, she said. My Chronagranin A level was very high. Apparently I cannot get into MD Anderson for several months, and I am very concerned about postponing treatment that long. Even though my doctor suggested MD Anderson, I think I am going to reach out to Mayo Jacksonville tomorrow to see if they can give me an idea of how soon I can get in there. Thanks for listening to my frustration!

@gneiss50, did you contact Mayo Clinic in Jacksonville? As you know Jacksonville has some of the best NETs specialists in the country. Here's the contact info if you don't have it already http://mayocl.in/1mtmR63

How are you doing?

Exactly the same history for the last seven years but have been on sandos statin injections ever 28 days to keep the remaining lymph nodes from growing larger. In spite of this treatment, a large tumor developed in my neck ( baseball size) and had to be removed.when surgery was initially seven years ago, appendix was removed and two feet of bowel as there was a large tumor blocking. All the nodes were not able to be removed so yes, I wait also for the next eruption! It has been seven years as mentioned with only the two surgeries so I take one day at a time with constant monitoring re cat scans, bloodwork, etc. If you are worried as well you might be, be your own advocate and go get whatever tests done. Tell your GP or oncologist that you need some peace of mind! Good luck!

I have an appointment with MD Anderson in two weeks, so I will keep it, and will see what they say. I chose to go there because my doctor has a working relationship with the doctor there, and because the location is better for my family. I received such good treatment at Mayo twelve years ago that I wanted to go back there, but I had to consider other things, too. I will post again after I know what they want to do.

Yes … 19 years since first diagnosis post-appendectomy (or what had been suspected as an appendicitis but turned out to be two small NETs in same area) in 2004. Second surgery in 2011. Mix of every 4 month, every 6 month, annual follow-ups with mix of imaging including CT scans w/ & w/o contrasts, Indium scans (years ago), MRIs, PET-CTs, blood-work, over the last 4 years, regular Octreotide or Lanreotide injections. Still feel mostly healthy (with occasional issues with various typical NET symptoms and pain) but recent increase in tumor activity has prompted plans for Lutathera treatment starting the end of this month (March ‘23). Long journey that I hope and feel confident will be quite a bit longer still so, yes, definitely get regular follow-ups!

Thank you, grammabitz. I am doing just that. This chat group, and two Facebook groups, are giving me information and insight that that I am filing away to use in my discussion with the MD Anderson doctor when I see him soon. I hope that you continue to do well and your docs find ways to keep the bad stuff at bay.

I had my visit with MD Anderson yesterday. They used my Mayo pathology report to determine that my tumors are well differentiated, slow growing, and not likely to change much. The doctor offered three treatment choices--do nothing but have scans regularly to measure change; try Lanreotide to shrink the tumors; try PRRT to kill/shrink the tumors. I chose Lanreotide, and will start it soon. I am relieved that. Thank you all for your advice, observations, and for sharing your own stories.

So glad to find this! Had NET surgery small intestine and mesentery in 2015 after diagnosis in 2014 with likely no future progression. However in 2018, discovered many liver mets which caused paraneoplastic autoimmune syndrome blasting clumps of antibodies onto my spinal cord causing neurological problems. after about 1 year of treatment including ablation of half the liver tumors I have been reasonably healthy and happy all thanks to my care at Mayo in Rochester. I have been on Lanretide injections every 28 days since 2018. now liver tumors are increasing and doctors have recommended Everolimus oral therapy or PRRT. I chose the oral Everolimus and took it for 12 days with fatigue, joint pains, and 7 painful mouth sores. I am off the drug for one week now to heal the sores. Wonder if these side effects will come back when I resume the Everolimus. Anyone have experience with this drug and any suggestions. thanks in advance.

Hello @davisnrn and welcome to Mayo Clinic Connect. It sounds as if you have had some effective treatment at Mayo Clinic. Mayo has some great NET specialists.

I am a 20-year survivor of NETs and I've had three surgeries of the upper digestive tract. No other treatment has been needed so far. You will find that each person's story of their NETs journey is quite different.

I am sorry to hear of your painful mouth sores. Does your medical team think that these will return when you begin the treatment again? I see that @bluedane has also taken Affintor (the brand name for Everolimus. I hope that he/she will join this discussion and share experiences with you.

I'm guessing that with these mouth sores, eating has been a problem. Have you lost a significant amount of weight?