Welcome to the NETs Group! Come say hi.

Posted by Teresa, Volunteer Mentor @hopeful33250, Jan 20, 2017

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.

breck | @breck | Nov 6 3:01pm

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

sophiarose | @sophiarose | Nov 6 3:10pm

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

vinnie694 | @vinnie694 | Nov 7 5:52am

In reply to @breck "Hi! I'm from Iowa. Have NETS in my lungs" + (show)

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

phyllisden | @phyllisden | Nov 7 10:43am

In reply to @sophiarose "I need to know how long after PRRT treatment should you get a MRI with contrast..." + (show)

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.

vinnie694 | @vinnie694 | Nov 7 11:00am

In reply to @sophiarose "I need to know how long after PRRT treatment should you get a MRI with contrast..." + (show)

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.

Teresa, Volunteer Mentor | @hopeful33250 | Nov 7 12:25pm

In reply to @breck "Hi! I'm from Iowa. Have NETS in my lungs" + (show)

Hello @breck and welcome to Mayo Connect. I see that this is your first post and that you have NETs in your lungs. Is this a new diagnosis for you? Are you involved with any treatment now?

I look forward to getting to know you. Will you post again?

breck | @breck | Nov 7 12:38pm

In reply to @hopeful33250 "Hello @breck and welcome to Mayo Connect. I see that this is your first post and..." + (show)

I had been diagnosed in another hospital and had half had half my lung removed. Thought it was gone but came to Mayo for second opinion and found out it's not they're watching it for 3 months and then I go back and he wants to hold off right now on treatment till it gets bigger. Some of the new nodules are very big and I was positive at the margin where they took out my last tumor which was by my heart I guess in my lung

Teresa, Volunteer Mentor | @hopeful33250 | Nov 7 1:01pm

In reply to @breck "I had been diagnosed in another hospital and had half had half my lung removed. Thought..." + (show)

You have had quite the introduction to NETs. I'm glad that you are being seen at Mayo. They should provide you with good guidance. The NET specialists at Mayo are extraordinary. This evening, the NETs support group will be meeting via Zoom at 5:30 EST. If you can attend, I think you would enjoy the speaker. After the speaker, the individual members share. There is a lot of support and good information offered in these meetings. If you would like to attend this month's meeting tonight, here is a link with information to register.
https://connect.mayoclinic.org/comment/1165938/
This support group meets on the first Thursday of each month. I hope you can join us!