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Ga-68 for detecting NETs

Posted by Teresa, Volunteer Mentor @hopeful33250, Jul 11, 2016

I understand that a new diagnostic tool, Ga-68, has been tested by the NIH and may be available to providers. It is supposed to be different than the Octreoscan and able to find NETs that might be missed by the Octreoscan. Has anyone heard of it before or been part of a study? I'm just looking for some info. Teresa

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

gaylejean | @gaylejean | May 3, 2017
In reply to @junebug15 "Hi Teresa. Just found this site and saw your post. I had the Ga68 scan at..." + (show)
@junebug15

Hi Teresa. Just found this site and saw your post. I had the Ga68 scan at the NIH last year. At that time there were only a few available in the US. Now, as I understand it, there are quite a few of these scans at major hospitals. I was lucky to get into the NIH clinical trials because I have familial carcinoid. I believe the trial is still ongoing, so if you know of anyone with familial carcinoid they could surely benefit from this. Everything is free (including our lodging). I was at the NIH for three days. They did several scans. The GA68 is a much more sensitive and definitive scan and it picked up some small tumors that the CT and octreotide did not show. Once you complete the trial, you or any family member, are welcome to come in for follow up at no cost. They are all wonderful people there. Moffitt in Tampa has a Ga68 now and I believe you can get a list of all the hospitals that have them at present. Hope this was helpful. Let me know if I can help you with any further questions.

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I would like more info as my mom had carcinoid and so do I

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junebug15 | @junebug15 | May 5, 2017
In reply to @junebug15 "Hi Teresa. Just found this site and saw your post. I had the Ga68 scan at..." + (show)
@junebug15

Hi Teresa. Just found this site and saw your post. I had the Ga68 scan at the NIH last year. At that time there were only a few available in the US. Now, as I understand it, there are quite a few of these scans at major hospitals. I was lucky to get into the NIH clinical trials because I have familial carcinoid. I believe the trial is still ongoing, so if you know of anyone with familial carcinoid they could surely benefit from this. Everything is free (including our lodging). I was at the NIH for three days. They did several scans. The GA68 is a much more sensitive and definitive scan and it picked up some small tumors that the CT and octreotide did not show. Once you complete the trial, you or any family member, are welcome to come in for follow up at no cost. They are all wonderful people there. Moffitt in Tampa has a Ga68 now and I believe you can get a list of all the hospitals that have them at present. Hope this was helpful. Let me know if I can help you with any further questions.

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I hope you are a candidate for the study. You could contact Joanne Forbes, Adult Nurse Practitioner. She is Dr. Wank's associate (he runs the program) and could probably answer any questions you may have. Her email is forbesjo@mail.nih.gov. Good luck. Hope this helps.

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Teresa, Volunteer Mentor | @hopeful33250 | May 5, 2017
In reply to @junebug15 "Hi Teresa. Just found this site and saw your post. I had the Ga68 scan at..." + (show)
@junebug15

Hi Teresa. Just found this site and saw your post. I had the Ga68 scan at the NIH last year. At that time there were only a few available in the US. Now, as I understand it, there are quite a few of these scans at major hospitals. I was lucky to get into the NIH clinical trials because I have familial carcinoid. I believe the trial is still ongoing, so if you know of anyone with familial carcinoid they could surely benefit from this. Everything is free (including our lodging). I was at the NIH for three days. They did several scans. The GA68 is a much more sensitive and definitive scan and it picked up some small tumors that the CT and octreotide did not show. Once you complete the trial, you or any family member, are welcome to come in for follow up at no cost. They are all wonderful people there. Moffitt in Tampa has a Ga68 now and I believe you can get a list of all the hospitals that have them at present. Hope this was helpful. Let me know if I can help you with any further questions.

Jump to this post

@gaylejean Let us know if you follow up with the this clinical study. We would like to hear about your experiences. Teresa

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Tom Wilson | @tomewilson | May 28, 2017

The Ga-68 PET scan was up and running at Mayo Rochester in October. My wife had one of the first scans. She had had a repeat this week as well.

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Teresa, Volunteer Mentor | @hopeful33250 | May 28, 2017

@tomewilson Thanks for sharing this information, Tom. I hope your wife is doing well with her NET disorder. If you (and she) are comfortable sharing, please let us know something of her NET history and treatment. We all learn from each other. Teresa

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