Any one with Neuroendocrine tumors getting the shot once a month?

Posted by amygirl @amygirl, Dec 23, 2024

I have heard there is side effects to the once a month shot( unsure of the name) what has any one experienced?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Sherry | @bluebelle | Jul 23 8:44am

Yes, it’s the same doctor:) I’m really not sure if I’ll have the CT this time but instead just do the PET at 6 months. He has done a CT a few times and then followed with a PET to obtain more accuracy a couple months later. This last PET was to get a new baseline after the Lutathera treatments.

jlsgt | @jlsgt | Jul 22 3:27pm

In reply to @bluebelle "Yes, I had a surgical resection upon my diagnosis, and I still have the monthly injection..." + (show)

Sherry, is the same Dr ordering both CT and PET scans? I ask because I have CT/PETs done at the same time. It's my understanding this is done to improve accuracy. It seems redundant to have a CT and then 2 months later have the PET? Just interesting that your Dr(s) do it different.

Sherry | @bluebelle | Jul 22 10:15am

In reply to @hopeful33250 "That is wonderful news, @bluebelle. I appreciate you sharing your results. As I recall, you had..." + (show)

Yes, I had a surgical resection upon my diagnosis, and I still have the monthly injection which will be continued indefinitely. I started Lutathera last July and ended it in December ‘24 so my PET scan was 6 months out from that. I will have another CT scan in 4 months and then PET scan 2 months later. Thanks so much!!!

Teresa, Volunteer Mentor | @hopeful33250 | Jul 21 2:22pm

In reply to @bluebelle "Yes!!! My last PET scan (a few weeks ago) showed ‘no new spread or tumor growth’..." + (show)

That is wonderful news, @bluebelle. I appreciate you sharing your results. As I recall, you had a surgical resection and monthly injections. Is that correct?

Partial remission is a wonderful place to be. When will you have your next follow up scan?

vinnie694 | @vinnie694 | Jul 21 10:37am

In reply to @bluebelle "Yes!!! My last PET scan (a few weeks ago) showed ‘no new spread or tumor growth’..." + (show)

Great News!!

Turkey, Volunteer Mentor | @tomrennie | Jul 21 10:00am

In reply to @bluebelle "Yes!!! My last PET scan (a few weeks ago) showed ‘no new spread or tumor growth’..." + (show)

Congratulations to you. Hearing that news had to feel great?

Sherry | @bluebelle | Jul 21 8:58am

In reply to @cliffy "Did the Radiotherapy reduce the liver Mets?" + (show)

Yes!!! My last PET scan (a few weeks ago) showed ‘no new spread or tumor growth’ and a couple of tumors on my liver actually shrank! One shrank so much that it was no longer detectable on the scan. We were very pleased with the results. My oncologist said that I am considered to be in partial remission. I’ll take that news and run with it:) My motto remains…one day at a time! Wishing you well…❤️

jlsgt | @jlsgt | Jul 20 2:13pm

In reply to @cliffy "I was informed by U.K. Professor that Lutathera is not approved by NICE in U.K.?" + (show)

I do know it is a very expensive treatment. Could that be the reason?

cliffy | @cliffy | Jul 20 12:01pm

In reply to @vinnie694 "After being on Ocreotide for almost 2 years a few of my tumors were still growing,..." + (show)

I was informed by U.K. Professor that Lutathera is not approved by NICE in U.K.?

cliffy | @cliffy | Jul 20 11:56am

In reply to @bluebelle "Hi! I have been receiving Octreotide injections once a month for about a year now. For..." + (show)

Did the Radiotherapy reduce the liver Mets?

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