• It can take 6 months to a year to get on the study waitlist.

• You pay for flights. Your hospital stay and all tests are free.

• Only 2 days in the hospital. 1 scan each day. Down from 5 days and multiple scans and tests.

    Sunday: (Saturday for me due to connecting flights)

• Arrive DC Sat or Sun. Depart DC late afternoon Wednesday.

• NIH Shuttle runs Sunday (no Saturdays) for airport pick up and drop off on Wednesday for free. 

• NIH shuttle serves Regan National (DCA), Dulles (IAD) and BWI Airports. Metro subway option depending which airport you fly into. DCA & IAD have metro connections, BWI does not.

• The shuttle is best if you're coming in on Sunday and staying at Safra Lodge because it's the easiest way to get onto campus and is free, as is the lodge. I use the Metro if I arrive on a Saturday. Then Uber or Metro from a Bethesda hotel to NIH campus by 6:45am Monday in order to get through security and then walk to bldg 10 in time for check-in. 

• You stay in the hospital Monday, Tuesday and leave Wednesday mid to late morning. I don't book my departure flight earlier than 4:00pm-ish.

• Sunday night you can stay for free, on campus, at Safra Lodge if rooms are available. You need to request such at least a month ahead of visit and stay on top of the request.

• Or stay at a nearby hotel Sunday night, at your expense, but know you have to go through the security entrance process to get onto campus early Monday morning and that can take 30+ minutes. You have to be at the Clinical Ctr by 7:15am Monday morning. Once on campus you can't leave until your done on Wednesday mid morning.

• There aren't any "restaurants" on campus so Sunday night you may order food to be delivered from an area restaurant (limited offering) or bring food with you. 

• There are coffee cafes in the hospital lobby+ during the week and a food court and food trucks for staff and guests during the week until 2:30pm.  You can also order food to your room once in the hospital. No alcohol available on campus.

• Sunday morning you start the 5HIAA diet, avoiding certain foods. Be sure to stay hydrated prior to your tests.

Monday:

• Sign in to the clinical center Monday at 7:15am. You'll be towing your luggage with you. Blood draw and ekg.

• After labs and ekg you'll be assigned a room on floor 5NW.

• Private room with big windows, bathroom & shower, tv, internet.

• Nurse Practitioner will come to your room and take medical history and give you your schedule and a "hat" for the toilet to collect urine.

• Bring comfortable clothes like sweatpants for test procedures and NO metal, no zippers etc.. The testing area is very cold so I wear a smartwool base layer or fleece sweatshirt and bring my kindle or phone to read while waiting. I also bring shower shoes for the in room shower.

• 18 FDOPA PET/CT Scan or CT of chest, abdomen, pelvis

• Drink lots and lots of water after these test are done. Flush out your system.

• Done for the day. Go walk outside around campus. Check out the food court and food trucks bldg 10 South, Lot 10H 11:00 am to 2:30pm. The food court pizza is pretty good.

• Dr. Wank & Nurse Practitioner(s) will come to your room around 4 or 5 and tell you the results of that days' scan.

• If you learn you have any carcinoid tumors, you'll be given the option of having surgery to remove the tumors by a National Cancer Center Oncology Surgeon within a few weeks or month depending on scheduling. The surgery doesn't cost you anything but you will pay for your flight to come back for the surgery and several follow up appointments 3 to 6 months out. 

• If you learn you have carcinoids, Dr. Wank will arrange for you to meet with the NCI Oncology Surgeon, who works closely with the study staff, so you can ask questions that will help you decide if you want to come back for surgery done at NIH/NCI.

    Tuesday:

• Phlebotomist will draw blood early morning while you're in bed.

• You'll have whichever scan test you didn't have yesterday.

• Drink lots and lots of water after these test are done. Flush your system out.

• Done for the day. Go walk outside around campus etc.

• Dr. Wank & Nurse Practitioner(s) will come to your room around 4 or 5 and tell you the results of that days scan.

• Let Nurse know you have to be at the airport by 1:00 or 2:00(?) tomorrow so you are able to catch a 10 or 11am(?) shuttle from NIH Wed morning.

• Do more exploring around campus or the bookstore, gift store etc.

    Wednesday:

• Phlebotomist will draw blood early morning while you're in bed.

• Nurse Practitioners will come see you around 9 or 10 to go over discharge papers and answer any questions you haven't asked already.

• Plan to catch the shuttle to the airport with enough time to not be rushed. 

• Miscellaneous

• There are over 100 families, 800 people, in this study now. We were family #7 when we started the trial in 2008.

• Grandma, Grandpa, all 7 offspring (Smith sibling) and several grandchildren (no names given without asking permission first) have provided blood for the research study.

• Dan, Barb, Frank & Stacy have provided tumor samples.

• Early years testing included an octreoscan, colonoscopy, endoscopy, MRI, CT, 18Floradopa CT/PET Scan, Camera Pill and 5HIAA Urine test along with bloodwork.

• The clinical trial covers testing only. It does not provide treatment plans or treatment for cancer.

• Functional vs nonfunctional NETs:
  Neuroendocrine tumors (NETs) may be functional, meaning they secrete hormones that cause symptoms, or nonfunctional, meaning they do not cause hormone-related symptoms.

• Serotonin-secreting tumors:
  Excess serotonin production is characteristic of functional NETs. Tumors of the small bowel (especially the ileum) are among the most common NETs that secrete serotonin, although not all small-bowel NETs are functional.

• Effects of excess serotonin:
  Chronic serotonin overproduction can contribute to fibrosis, particularly in the mesentery and heart valves. This fibrosis may lead to abdominal pain, bowel obstruction, gastrointestinal bleeding, and anemia, often due to mesenteric scarring, ischemia, or tumor-related ulceration.

• Barb suffered from "Carcinoid Syndrome" at times. Her face, neck and chest would flush, red hot. She would have severe diarrhea and often with abdominal cramping and sometimes be easily winded, shortness of breadth. She experienced edema in her feet and legs.

• Carcinoid Syndrome is not common but is more likely with advanced disease and metastasis to the liver.

• Our family does not have MEN1. (multiple endocrine neoplasia 1) which some people confuse with NETs.