Welcome to the NETs Group! Come say hi.
Hello and welcome
Let's pull up our chairs in a circle and check in with each other and talk about how we are doing with our NET diagnosis. Any new tests, meds or treatments going on for you? What about your symptom control? Any concerns you have?
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
My name is Antoin and I have Malignant Pheochromocytoma I've been battling for 25 years now! Just completed Radiation for my second time and so far so good! Hoping to meet some others dealing with this disease
Hi Teresa, I had been having MRI scans every 4-6 months after removal of the primary NET from my small bowel in 2018, but proliferation of metastases to liver and peritoneum caused the docs to switch to the PET in November.
Now they have found spread to sternum, so I started on Lanreotide in December and think it will be all PET scans from now on to check if the drug has succeeded in stopping the spread. Fingers crossed!
I appreciate your update. In one of your earlier posts, you mentioned that you were not having any carcinoid symptoms. How are you feeling now? Any problems with pain and/or eating issues?
Thanks for following up, Teresa. Nope; I’m so lucky — never a symptom nor any pain. I have had the expected diarrhea after the shots (3 so far) but no eating or digestive issues. I’m so eager to see if the shots have made a difference when I meet Dr. Le after the scan Feb 28. With the support of this group, I have found it easy to stay hopeful even faced with the reality that this will never be fixed. I feel great!
I’m itching all over and wonder if it’s from the tumour
I have an Acth producing tumer in lung if any one had similar case what was the protocol if treatment
As it has been a while since you last posted and I was thinking about you and wondering how you are doing. Has any chemotherapy or other treatment been recommended? Will you post an update when it's convenient for you?
Regarding the "itching all over" I'm wondering if you have asked your doctor about this. If not, please do so. Not being a medical professional, I do not know if it is related to the tumor, it could, of course, be related to a medication that you are taking.
When did the itching start? Is it in close proximity to any of the meds you are taking. Will you follow up with your doctor?
Hello @hollywood817 and welcome to the NETs discussion group on Mayo Connect. I see from your post that you are new to the NETs diagnosis. I'm glad that you found this forum.
I would like to invite other members (@sophiarose @mkmn @cu2 @pjsheridan2022 @jay1225 @spartan @sturns @trivia @kim1965 @dbamos1945) who also have liver NETs to share their experiences with you.
You mentioned that you are having monthly injections. Are these monthly injections being used to treat the symptoms of carcinoid syndrome, such as diarrhea, etc.?
You also mentioned that you will also be having PRRT. Is there a schedule for when this treatment will start?
Yes I will follow up with my doctor. I had the itching before my pain crisis that put me on this wild ride.