Ga-68 for detecting NETs

What exciting news Teresa.
I found some further information for Ga-68 or Gallium-68. From the Carcinoid Cancer Foundation - "NIH Clinical Trial: Unique Opportunity for Carcinoid & NET" Cancer State-of-the-Art Scan http://www.carcinoid.org/for-doctors/general-information/clinical-trials/nih-clinical-trial-unique-opportunity-for-carcinoid-net-cancer-state-of-the-art-scan/

Here are the study details Evaluation of 68Gallium-DOTATATE PET/CT for Detecting Neuroendocrine Tumors https://clinicaltrials.gov/ct2/show/NCT01967537?term=NIH+%26+Gallium+scan&rank=2

@dawn_giacabazi @tomewilson @lorettanebraska @gaylejean have you heard about Ga-68?

@colleenyoung Thanks for looking into this, I am looking forward to hearing if anyone else has any experience with this clinical trial.

@colleenyoung Hi Colleen: I just wanted to update you on my email correspondence with NIH regarding the GA-68 clinical trial. When I emailed them they gave me the criteria that they were looking for in a candidate. I had mentioned in my email that I had a concern because of a slow-growing thyroid nodule that was recently looked at by Ultra Sound. While I know that NETs are usually in the digestive tract, the slow-growing nature of this nodule made me think of NET. In the response from the NIH I was told that they did have a special interest in the thyroid. All of this to say, that I'm going to check with my NET doc at U of M to see what he has to say. My endocrine check up was done at a hospital closer to home so I'll need to fax him the results. Teresa

Thanks for the update Teresa. From a research perspective this sounds very interesting indeed.
Have you ever been part of a clinical trial? Here's an article from NIH about the benefits and possible risks (or inconveniences) http://www.cancer.gov/about-cancer/treatment/clinical-trials/taking-part
If you're eligible, they'll tell you exactly what to expect. Do keep us posted on what your NET doc at UofM says.

@colleenyoung Thanks for the extra info about clinical trials. Yes, I'll keep you posted for sure. You folks are an important part of my support group and I'm grateful for your knowledge, kindness and interest. Teresa

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.

@junebug15 Welcome to Mayo Connect! I'm so glad that you found our website and were able to contribute information about the GA68. Since you mention "familial carcinoid" there must be others in your family with carcinoids. I have heard good things about the clinical trial at NIH but it is nice to get a first-hand report.
I have had 3 surgeries for carcinoids (all in the duodenal bulb). The surgeries were in 2003, 2005 and again in 2016. So far, no follow up treatment has been required. I would be interested in the GA68 as a way to be sure that there is no other primary source, but have not been able to connect with that test yet.
If you are comfortable please share with us something about your history with carcinoids. We look forward to getting to know you. Teresa

Hi Teresa: I would be glad to share my journey with you and your followers. In 2013 my carcinoids were incidentally found (as so many are) when I had a CT b/c of abdominal pain. I had surgery with 2 ft. of small intestine removed. I am followed at Univ. of PA. which has an entire unit headed by Dr. David Metz and is entirely dedicated to NETS. My mom died in 2008 of extensive carcinoid which was NEVER DIAGNOSED (she had no symptoms, was quite healthy and died of a bowel blockage at age 89), and therefore I was eligible for the NIH's clinical trials. I was at the NIH last year for three days. Everything is free of charge and they give you copies of all scans and reports, wonderful. They did a CT, MRI, Octreotide and Ga68. The Ga68 showed more small tumors in the area which were not seen on CT, O-scan or MRI. This is a much more definitive test and shows very small tumors. In a clinical study for MEN1 the Ga68 detected 107 lesions; the SPET/CT detected 33 lesions and the CT detected 48 lesions. Pretty impressive. Currently I am going up to U. of P. once a year. After the findings at the NIH all of my drs. concurred that I still needed no treatment. I am scheduled to go up in July for follow up. So far, no symptoms and am feeling fine (outside of my sciatica which is terrible). The Ga68 is now being offered in many other hospitals. I am in fl. and I know Mayo has it here, as well as Moffitt where I will go for my follow up scan next month. U. of P. also has a Ga68 as many University hospitals do. I think if you google you can find out exactly who has it. It's a PET/CT scan and I believe it takes about 45 minutes to complete. Will let you know how I make out. By the way, was wondering if my fellow NET buddies have heard of the book Zebra Talk, Navigating the world of neuroendocrine tumors. I got it at the U. of P. It is a super-informative book chuck full of info. on everything you want to know about NETS. You can purchase this online at http://www.thepatientsproject.org. I think it's about $10. Hope this was helpful. Let me know if you have any more questions. Thanks for listening.

@junebug15 Thanks for sharing your history with carcinoids. Yes, like you, my NET was found "incidentally" during an upper endoscopy for GERD. After the first surgery, I was checked more regularly. Then 10 years after my 2nd surgery, I was told that it would probably not be an issue after so long of a time. Well, I was diagnosed with pancreatic cysts (this too was found when I had a CT scan for diverticulitis) and so I had an upper endoscopy with ultrasound and then the 3rd NET was found. Outside of surgery, there has been no other follow up. I will check with my doctor at University of Michigan later this month and see what he says about the GA68. I would like to introduce you to our other members of the NET group here at Mayo Connect, @amyh2439 @tresjur @joannem @gaylejean @lucci50 @derekd @gulzar @joanney @jenchaney727@dzerfas @lorettanebraska @wordnoid @trouble and @upblueeyes @ahtaylor @heidilynn4 and I encourage everyone to check out the above post of @junebug15. Please welcome our new member. Has anyone else read this book, Zebra Talk? If so, please feel free to comment.
Teresa

Thanks Teresa. My pleasure. Hi to everyone in the group. Hope we can all help one another in some fashion. Message me anytime. Stay well.