Welcome to the NETs Group! Come say hi.

My experience over the 22 months I’ve been getting the injections is that they determine the next MRI based on the the results from the previous one, I’ve gone 5 months between them down to 3 months.

Sophiarose, the radiologist and doctors want most of the Octreotide or Lanriotide out of your system so the at least 3 weeks after your last shot is preferred.
The way the scheduling worked for my next Dotatate scan is I'll get the scan on Jan 8th and have my next shot on the 9th. Your doctor decides how often to do them - some have them done every 3 months, some every 6. So the radiology department where you'll have yours done should ask you when was your last injection, and your doctor will determine how often to do them.
Good luck.

Hi, breck from Iowa! I’m from Florida, have NETS in my liver and small intestine.. Welcome!

I need to know how long after PRRT treatment should you get a MRI with contrast and Pet scan
Also I am on Octreotide what is the wait time from injection to mri and PET scan
Thank you in advance for the reply

Hi! I'm from Iowa. Have NETS in my lungs

I would like to invite everyone who has been involved with NETs to a virtual support group that meets on the first Thursday of each month, via Zoom. This group originates from Mayo Clinic in Florida and is open to everyone. This month there will be a speaker, discussing the role of surgery in NETs treatment. After the speaker, there is ample time for the members of the group to share their own stories and ask questions of each other. Here is more information about the November meeting and registration. Please not that you will need to register in advance in order to obtain the Zoom link.

NETs Support Group Meeting, Thursday, November 7th, from 5:30pm-7:00pm EST
Guest Speaker: Dr. Susanne Warner, Hepatobiliary and Pancreas Surgeon
Mayo Clinic Rochester
The Role of Surgery in Patients with NETs
Location: Virtual (Zoom)

Please register in advance for this meeting as space is limited to 50 participants:
https://mc-meet.zoom.us/meeting/register/tJwkf-ivpz4jG9aqLYrH43Nl-mHPpWp-RBuf
After registering you will receive a confirmation email containing information about joining the meeting

For Questions or Concerns please call 904-953-7266

I appreciate you adding information about your journey with NETs to this discussion group, @quinnie2023. I'm also happy that you mentioned that you find Connect to be informative and helpful.

Being asymptomatic is a common theme for many of us. I've had three surgeries of the upper digestive tract for NETs, while being asymptomatic.

I see that you mention that some of your current symptoms might be related to possibly eating incorrectly. Eating appropriately for the disorder, is important for all of us with digestive tract issues. What type of eating plan has been the most helpful for you?

It sounds as if you are getting good medical care. There are several posts on liver NETs that you might find interesting. Here is a link to several of those posts:
https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/
I look forward to hearing from you again. Will you continue to post as you gain information or have questions?

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.

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?

What was the rationale for switching to every 3 weeks?