2014 National NET Patient Conference

                                                     

Contact

Maryann Wahmann 
CCAN                      2014netconf@optonline.net                     or call 866 850 9555

 

When

Thursday September 18, 2014 - 3:00 PM
-to-
Saturday September 20, 2014-  5:30 PM

A Special Lungnoid Session
 Sunday Sept 21, 2014 - 8 AM to 12PM 
Add to Calendar 

Where

Charlotte Marriott City Center, Charlotte, NC 
100 West Trade Street
Charlotte, NC 28202 
 Hotel rooms $139 a night.  

Reservations for the Event will be made by individual attendees directly with Marriott reservations at (800) 228-9290 or (704) 333-9000 or click link

 Book your group rate: 2014 National NET Cancer Patient Conference >>

This is in addition to your conference registration fee. Do not forget to register for the conference!


Driving Directions 

A Special Thanks to our Sponsors!

Platinum Sponsors
Inter Science Insititute
Gold Sponsors
Novartis Oncology
Ipsen Pharmaceutical
Lexicon Pharmaceuticals
Pfizer Oncology
Sliver Sponsors
Ochsner Medical  Center-  Kenner
LSU
Mallinckrodt
Enhanced Exhibitor
University of Kentucky
NET Alliance
 

Contact us if you need a special dietary restrictions. There will be Vegetarian meals available. Please call the office!                    866 850 9555

Register Now! 

Things to do & places to eat in Charlotte
http://www.charlottesgotalot.com/101-fun-things-to-do-in-charlotte 
http://www.tripadvisor.com/Attractions-g49022-Activities-Charlotte_North_Carolina.html 
http://www.charlottecentercity.org/

2014 National NET Patient Conference

The 2014 National Carcinoid/NET Patient Conference is right around the corner! Mid-gut noids, Lungnoids, P-Net patients, Whipple patients and OTHER NET PATIENTS- get ready for another fantastic lineup featuring 20 or so WORLD CLASS NET EXPERTS presenting the information you need!
Some of the topics are brand-new and just published, sprinkled in with advice from the EXPERTS on the top issues faced by NET patients. Topics that will be covered welcome an audience of all levels, including patients, family members and caretakers of patients, as well as physicians and other health professionals.
Plus, you'll get to network with hundreds of other patients who understand what you are going through and share your concerns.
This is a perfect opportunity to build your knowledge and become a better advocate for your health!
$125 per person from 5/1 through 8/31.
$150 pp for late registration- 9/1 and later.
Please note there will be a cancellation fee of $25 pp!

Tentative agenda: Times and titles are subject to change.                              The physicians listed have committed to making presentations.

2014 NETS PATIENT CONFERENCE CHARLOTTE, NORTH CAROLINA

 Thursday, September 18^th –  Saturday 20^th 

THURSDAY AFTERNOON
3-5 PM       Emotional implication of NETS treatment: Ronda Ayala, RN

THURSDAY EVENING

6-9 PM                  Reception 
FRIDAY AM     Moderator: Eugene A. Woltering, MD       

7:00-7:45              Breakfast

7:45-8:00              Introduction: Bob and Maryann Wahmann - CCAN
8:00-8:45              NETS— Introduction to the basics: Richard Warner, MD -                          Mount Sinai Hospital NY,NY
8:45-9:30              NETS pathology: What’s important and what’s not? : Chanjuan Shi, MD Vanderbilt University Medical Center , Nashville, TN
9:30-9:45              Break
9:45-10:15            Midgut NETs surgery. The technical aspects: Yi-Zarn Wang MD -          LSUHSC  New Orleans,LA
10:15-10:40         Pancreatic NETs surgery. The technical aspects: Michael Choiti MD -               UT Southwestern Dallas,TX
10:40-11:00         Does serial cytoreduction of midgut NETS increase survival? : Eugene A. Woltering MD -  LSUHSC  New Orleans,LA - Oschner Medical Kenner
11:00-11:20         How NETS affects your heart: Current recommendations for ongoing scanning, prevention and current therapy of NETS-induced heart disease: Heidi Connolly MD Mayo Clinic Rochester, MN 
11:20-12:00         Q & A with panel and moderator
12:15-1:15            Lunch
FRIDAY PM      Moderator: Thomas M. O’Dorisio MD
1:15-2:00              Clinical trials for chemotherapy/biologic response modifier therapy of gut- based NETS: Edward Wolin, MD -  Cedars -Sinai Medical Center, LosAngeles, CA
2:00-2:45              Clinical trials for chemotherapy/biologic response modifier therapy of pancreatic NETS.: Emily Bergsland MD -  University of California , San Fransico , CA
2:45-3:00              Break
3:00-3:45              New approaches to the treatment of NETS induced diarrhea:                  Sajeve Thomas MD - MD Anderson Cancer Center Orlando, FL   

3:45-4:15           Somatostatin analogs control symptoms and slow
tumor growth:  Summary of recent trials: Alexandria Phan MD

 
4:45- 5:30             Q & A with above panel and moderator
SATURDAY AM Moderator:  Dr. J. Philip Broudreaux
7:00-8:00              Breakfast
8:00-8:35              The Benefit of Multidisciplinary Teams Treating NETs:  Eric Liu MD-  Vanderbilt University Medical Center , Nashville, TN
8:35-9:10              The role of the gastroenterologist in the diagnosis and treatment of NETS:               David Metz MD - Perelman Center for Advanced Medicine Philadelphia, PA
9:10-9:45          Summary of therapy with ¹⁷⁷ Lu vs. high dose LAR: The AAA trial: Richard Campeau- MDLSUHSC  New Orleans,LA           
9:45-10:00            Break
10:00-10:35         An update on Multi Visceral Organ Transplants (MVOT): Rodrigo Vianna M.D-  University of Miami , FL
10:35-11:00          My personal experience with MVOT:  Paul Johnson MD
11:00-12:00         Q & A with all panel members and moderator
12:15-1:15           Lunch
SATURDAY PM Moderator: Richard Warner MD
1:15-2:00              Investigator-initiated trials of   ⁶⁸ Gallium somatostatin analogs: Where are we going?: Thomas M. O’Dorisio MD -  University of Iowa
2:00-2:45              Update on studies in MEN I and the risk of familial NETS: Steve Wank MD -  NIH
2:45-3:00              Break
3:00-3:20              How to scan for NETs: Primary’s and their metastasi: David Bushnell MD-     University of Iowa
3:20-3:40              Vitamin supplements & alternativetherapies: How to assess safety & efficacy:  Mary Hardy, MD
3:40-4:25              Spheres vs. Chemoembolization vs. Bland embolization- Which is best? : Charles Nutting MD -  Radiology Imaging Associates Englewood, CO
4:25-5:15              Q & A with all panel members and moderator
5:15                        Announcement of next National Patient NET conference in September 2016:     Eugene A. Woltering MD and CCAN
SPECIAL CONFERENCE ON LUNGNOIDS AND DIPNECH
Sunday September 21st, 2014
SUNDAY AM       Eric Liu MD Moderator
8:00-8:30              How we find lung NETS and their metastasis: Eric Liu MD - Vanderbilt University Medical Center , Nashville, TN
8:30-9:00              Bronchoscopy, percutaneous and trans-bronchial biopsies for lung lesions: Susan Gunn, MD - Oschner Medical Center, Kenner, LA
9:00-9:30              Surgical approaches to DIPNECH, primary NETS and their metastasis: Rodney Landreneau MD-   Oschner Medical Center, Kenner, LA
9:30-9:45                Break
9:45-10:30            Role of chemotherapy, biologic response modifiers and PRRT in the therapy of lung NETS: Dan Granberg MD. PhD - Uppsala University Hospital Sweden
10:30-11:30         Questions and Answers:  All speakers and moderator    

Bastyr trained Naturopath appointment

My busy, full and blessed life continues to include fun adventures, family, grandchildren and the management of my health. I've written frequently about the challenges regarding my diet now that I am missing my spleen and gall bladder, my pancreas is still on the mend and my liver has grown back. The list of symptoms I'm reporting is lengthy and complicated. They are: frequent thirst and urination, high blood sugar levels, edema in feet and ankles, bloating and weight gain, fatigue, abdominal pain and diarrhea, head aches and burning, itching, watery eyes. My eye sight has also declined substantially. Prior to the pancreas surgery I was advised that I would probably develop diabetes at some point due to the pancreas damage. I will be seeing Dr. Shaul my primary care physician about diagnosing and getting medication for diabetes if I do indeed have it. My joint pain could be normal ageing and I could have developed allergies causing some cold like symptoms and eye disturbance. It is unnerving not to know when something is related to the cancer as opposed to normal aging or other medical conditions or concerns. My mom had hip pain by my age and went on to have 3 hip replacements. It is likely I need glasses beyond the readers I now use and may have eye strain.

All in all I am managing well. I try to eat mostly organic lean protein and fruits and vegies. I try to drink water all day. I seriously limit my sugar and carbs. I have been walking and swimming daily (thus the concern about weight gain). I should be loosing weight and Peter can attest to the fact that I eat very small portions and have been extremely disciplined.

Two recent trips one a boat trip to Princess Louisa in BC on our 22 foot power boat with friends and one a family reunion in CA for Peter's mom's side of the family were fun. Both took there toll however and because they were back to back I ended up really exhausted by the time we returned. I'm still having grandchildren over to watch Mon-Wed so it took me a few days to catch up on sleep. I'm feeling pretty good today and did a couple hours of yard work and will now go swim laps while my wonderful friend Louise watches Paityn for me. Her assistance again makes it possible for me to help my children out with childcare in this way. I truly adore and love my 3 little darlings. They bring me a great deal of joy and laughter. It is well worth the tiredness at the end of the day.

Due to my intestinal challenges and tiredness I have had to decide not to participate in the annual Native American canoe journey that I love so much. This will be my second year to miss going. I hope to be able to rejoin next summer. We'll see how things go. It has been one year since the liver surgery and only 7 months since the pancreas surgery. I've been told it takes over a year to fully recover.  I'm thrilled that the cancerous tumors seem to be staying tiny and not causing any problems with my health. As I fully recover and learn more about how to take care of my digestion and balance exercise with fatigue I expect to feel even better.

I've got lots of fun things coming up over the rest of the summer. A trip to the ocean with my parents, to Vancouver by boat with Peter, to Utah to visit a girl friend with old Evergreen college friends, to the ocean again for our wedding anniversary, to Mason Lake near Shelton to visit my cousins and in September a conference on Neuroendocrine Tumors for patients in North Carolina.


Tomorrow is my monthly Octreotide shot at Group Health which appears to be keeping the symptoms of the tumors at bay as well as keeping them from growing. Also tomorrow I'll see,
 Dr. Chad Aschtgen ND (Naturopathic Doctor), American Board of Naturopathic Oncology (FABNO) at the Institute of Complementary Medicine (IC Medicine.com) Integrative Health Clinic located near me in Seattle. I'm excited to see him for the first time and see what ideas he might have for diet and supplements to help me. I feel like I'm doing so much and taking so many supplements all ready but I may not be doing the best thing given my circumstances.

As I said above on Monday 6/30 I'll see Dr. Shaul about the diabetes question too. I've been getting massages, using my sauna and remaining relatively stress free. I'm having a birthday party for my son at our house this Saturday.  I enjoy being with his family and friends. I love being grandma to his wonderful children. We've got lots of other family birthdays in July and August with my dads 80th - a big one. We recently updated our deck for BBQ's and look forward to showing it off along with our colorful yard that I've been working in.  Life is good!

I am thankful for every day and every relationship. I see love and good things everywhere I look. Thank you for reading my blog and for all the prayers always coming my way. You know they are helping me stay healthy.

What is Carciniod Cancer

WHAT IS CARCINOID CANCER? Carcinoid is part of a group of tumors called neuroendocrine tumors that grow in the hormone producing cells, is listed with the National Organization of Rare Disorders.

Because neuroendocrine (NET) cancer is considered rare and due to a lack of public awareness the disease has had a low priority for medical research. Current studies suggest that Carcinoid and Neuroendocrine tumors are not as rare once thought.

Over 11,000 new patients are diagnosed each year and as many as 125,000 patients are living in the US today- AND the number of diagnoses is increasing by more than 5% annually.

Carcinoid/NETs are also regularly overlooked during the diagnostic process. Many patients go untreated for years and have been told the have another disease. However, due to the generosity and selfless effort of many people, progress IS being made!

If the tumors are found early and you get proper treatment, you can live a long life. There are many 20 year survivors living in the USA. Failure to diagnose the disease and provide proper treatment, however, has the most serious consequence.