The Countdown is ON!

The countdown is on as today we are just over ONE WEEK OUT from the 2016 National NET Patient Conference weekend in New Orleans, LA!!

zebramask

Unable to attend? Subscribe to NETCancerAwarenessBlog for exclusive sneak peaks and updates about the 2016 National NET Patient Conference! Something tells me there will be some vlogging going on that will have some important information that you WON’T want to miss! =]

NCAN is so excited as we get our last minute details ironed out for you!

Look closely here for some addional details and events that have not yet been published:

Thursday- In addition to the opening session, which includes a patient panel whose panelists are medical professionals AS WELL AS patients you will enjoy a really exciting cooking demo featuring neuroendocrine cancer patient friendly recipes.

Friday- 5 PM – Grab a smoothie and a cookie made with neuroendocrine cancer patients in mind, courtesy of one of the conference sponsors, Novartis.

novartis-logo2

6 PM – join us for a light snack and networking while you wait for a private comedy show….

7 PM – ENJOY THE COMEDY OF NATIONALLY ACCLAIMED COMEDIAN AND EMMY AWARD WINNING WRITER STEVE MAZAN. STEVE WILL BE PERFORMING A PRIVATE SHOW JUST FOR ATTENDEES OF THE CONFERENCE. DON’T MISS THIS ONE!

stevemazan

This event is sponsored by: NCAN Bandaid

Sunday- 8 AM to noon – Group Leaders Meeting. If you are a group leader and have not signed up yet, please call us ASAP at 866-850-9555 or email info@netcancerawareness.org if you would like to attend. You MUST sign up today if you would like to attend.

Here’s a more detailed look:

Thursday

Noon- Registration table open

1 pm – 4 pm- Thursday talks and patient panel

4 pm to 6 pm- Novartis Cooking Demo

6 pm to 9 pm- Welcome reception

 

Friday

7 am- Registration and breakfast

7:45 to noon- Morning general session

9:30 – 9:45 break

noon to 1 pm- lunch

1 pm to 5:15 pm- Afternoon general session

2:45 – 3:00 break

4:30 pm – 6:15 pm- NET-friendly smoothies and cookies provided by Novartis

6:00 pm – 7:00 pm- Pre-show snacks

7:00 pm – 7:45 pm- Comedy show- Laughter is the Best Medicine starring Steve Mazan

 

Saturday

7 am- Breakfast

8 am – noon- Morning general session

9:30 – 9:45 break

noon – 1 pm- lunch

1 pm – 5:30 pm- Afternoon general session

2:45 – 3:00 break

 

Sunday

8 am – noon   Group leaders’ meeting

 

Also, here is the agenda for our General Sessions:

2016-net-pat-conf-agenda-rjw-rev-7-6-16-page0001

2016-net-pat-conf-agenda-p2

A few more reminders:

  • Please bring extra layers of clothing! The conference rooms DO get cold, please be prepared!
  • For patients: please bring extra medication, in case of emergency! And take pictures of your medication bottles on your cell phone in case you were to lose them!
  • As always, the conference is a safe space for patients. It is a place for learning about a better quality and quantity of life. Please refrain from self-advertisement and solicitation at our conference. If you are caught soliciting, you will be asked to leave for the remainder of the conference without refund. NCAN and our sponsors thank you for understanding and helping us keep this space focused on what is important.

Keep your out for a post on Friday about some of my MUST SEEs and MUST HAVEs while in NOLA! Be sure to subscribe now to be the first to get it right to your inbox!

2016 LungNET Conference Video Recordings

Happy Monday, fellow Zebras!

Some of you may have seen that NCAN and The Healing NET Foundation have been slowly releasing the videos from the LungNET Conference in Denver, CO on June 11th. Here is a place where you can get all the links in one spot!

Introduction to the 2016 LungNET Conference:

Visit NCAN’s website here. HNF’s website here, and for more information on Dr. Liu, you can get that here.

Basics of Lung Neuroendocrine:

For more information on Dr. Ramirez, you can see my post introducing him, here.

Pathology for Lung Neuroendocrine

You can find more information on Dr. Ryan here.

Surgery of Lung Neuroendocrine:

You can find more information on Dr. Parker here.

Pulonary Medicine for Lung Neuroendocrine:

To find more information on Dr. Kobitary click here.

Medical Therapy for Lung Neuroendocrine:

For more information on Dr. Öberg click here.

Clinical Trials in All Neuroendocrine:

For more information on Dr. Liu, see above links to Dr. Liu’s introduction as well as The Healing NET Foundation website.

Non-Medical Management of Metastatic Disease:

For more information on Dr. Nutting, click here.

Questions and Answers Part 1

Questions and Answers Part 2

NCAN would like to thank all of their speakers, sponsors, and attendees for another successful event!

Want to experience an NCAN NET Patient Conference yourself? Please keep up with NCAN by adding yourself to their mailing list by going to their website and be sure to “like” NCAN on Facebook! Also, keep your eyes out here, on NET Cancer Awareness Blog for some awesome announcements for 2017 coming soon!!

Upcoming: The 2016 National NET Patient Conference in New Orleans, LA!! If you haven’t already, check out that information here because time to register is running out!!

Survey on Cancer Education for Children

How much is too much (or not enough) to tell children about a parent’s cancer diagnosis?

Cancer education for children is something I am extremely passionate about. I have very strong views on this matter, having lived through this myself. I get asked all the time about what a parent should say or how much to say to their children when it comes time for the “Big C” discussion. On the other hand, since about the age of 12, I have also heard from hundreds of kids, like myself, who are on the receiving side of the information, who feel they haven’t been given enough.

This is something that I have been thinking about a lot the last few months and have tailored my ideas moving forward specifically for children of parents with NET Cancer. (Keep your eyes peeled this fall!)

I have been approached by CancerEd: a team of faculty and students from Calvin College in Grand Rapids, MI. CancerEd is working to create free content to be used teach K-12 students about cancer in a scientifically accurate, yet sensitive manner with materials that are age-appropriate. They already have a few of these lesson plans that can be viewed on their website CancerEd.org.

cancered

In efforts to keep developing quality content and to tailor these curriculums, they have reached out with a survey to better understand the conversation and tools being used (or needed) by parents (or caregivers) who have cancer (or had) in order to facilitate these highly important and difficult discussions.

Please take the time to fill out this anonymous survey and please pass this survey on to anyone who can participate in order to gather this extremely important information!

CancerEd Parent Survey

A huge thank you to anyone who takes the time to fill this survey!

If you have any questions or concerns reguarding this survey, or if you would like a PDF version to fill out or pass on to others, please reach out to me at tricia@netcancerawareness.org or leave me comments here!

Thanks again!

Tricia Wahmann-Knatz

Speaker Spotlight – National Conference Edition Part 11

drhowe

James R. Howe V, MD

uofiowaclinic

Bio:

Director, Division of Surgical Oncology and Endocrine Surgery

Co-Director, Neuroendocrine Cancer Clinic

Professor of Surgery  – Surgical Oncology and Endocrine Surgery

Education:

MD, University of Vermont College of Medicine

Fellowship, Surgical Research Fellow, Washington University

Residency, General Surgery, Barnes Hospital

Fellowship, Clinical, Surgical Oncology, Memorial Sloan-Kettering Center

Licensure and Certifications:

Iowa Medical License, Iowa Board of Medicine

Certified, Advanced Trauma Life Support

Board Certified, General Surgery, American Board of Surgery

Qualifying Examination, American Board of Surgery

Recertification Examination, American Board of Surgery

Research Summary:

I am a Surgical Oncologist and Endocrine Surgeon who specializes in taking care of patients with cancers of the pancreas, liver, GI tract, soft tissue sarcoma, melanoma, thyroid, parathyroid, and adrenal glands; I am co-director of the neuroendocrine cancer clinic, Division Director of Surgical Oncology and Endocrine Surgery, and Professor of Surgery at the University of Iowa. My area of research expertise is in Familial Cancer Syndromes, genetic linkage, gene discovery, and gene expression studies. My postdoctoral training at Washington University under Helen Donis-Keller, Ph.D. and Samuel Wells, M.D., was directed at the identification of the gene for Multiple Endocrine Neoplasia Type 2. As a faculty member, my focus has been the genetics of Juvenile Polyposis, which led to the discovery of the 2 predisposing genes. More recently, I have developed a large clinical practice and research interest in the genetics of neuroendocrine tumors (NETs). Our current research focus is the study of gene expression profiles in pancreatic and small bowel NETs to identify new targets for imaging and treatment, and collection of families to search for predisposing genes.

For more information on Dr. James Howe and the University of Iowa Hospitals and Clinics, please visit their website here. You can also view Dr. Howe’s academic profile, here.

You can read Dr. Howe’s publications by clicking here.

For information on the Neuroendocrine Cancer Program at the University of Iowa Hospitals and Clinics, you can find that here.

To make an appointment, please contact:

University of Iowa Hospitals and Clinics: 200 Hawkins Drive, Iowa City, IA 52242

Phone: (800) 777-8442 or (319) 356-1727

Dr. Howe at the 2016 National NET Patient Conference:

Topic: Hepatic Resection vs Liver Directed Therapy

When: Saturday, September 24th, 2016 at 8:30AM*

SIGN UP NOW FOR THE 2016 NATIONAL NET PATIENT CONFERENCE in New Orleans, LA from September 22-24th to see Dr. Howe and 19 other experts speak on Neuroendocrine Cancer! 

Registration is $125 per person including

  • Thursday’s Welcome Reception 
  • Breakfast, Lunch, and snacks for both Friday and Saturday
  • And keep your eyes out for some special prizes!

Registration does not include your hotel stay or travel expenses.

For more information and to buy your ticket, click here!!

*Time and Date are subject to change.

To check out some of our other speakers, click here!

Speaker Spotlight – National Conference Edition Part 10

drheidiconnolly

Heidi M. Connolly, M.D.

mayoclinic

Location

  • Minnesota

Departments

  • Cardiovascular Diseases

Education

  • Fellow – Adult Congenital Heart Disease Special Fellowship
    Mayo Graduate School of Medicine, Mayo Clinic College of Medicine
  • Fellow – Cardiovascular Diseases
    Mayo Graduate School of Medicine, Mayo Clinic College of Medicine
  • Resident – Internal Medicine
    Mayo Graduate School of Medicine, Mayo Clinic College of Medicine
  • MD
    Royal College of Surgeons in Ireland
  • Other – Undergraduate
    Hamline University

Certifications

  • Cardiovascular Diseases
  • Internal Medicine

Academic rank

  • Professor of Medicine

Professional Highlights

  • Director, Adult Congenital Heart Disease Clinic
  • Director, Congenital Heart Center

Interests

  • Adult congenital heart disease
  • Carcinoid heart disease
  • Echocardiography
  • Marfan syndrome and other aortic disorders
  • Pregnancy and heart disease

For more information on Dr. Heidi Connolly and the Mayo Clinic in Rochester, MN, please visit their website here and the US News report on her here.

You can read Dr. Connolly’s publications by clicking here.

To make an appointment, please contact:

Mayo Clinic Rochester: 200 1st Street SW, Rochester, MN 55905

Phone: (507) 284-2511 or (507) 538-3270

Dr. Connolly at the 2016 National NET Patient Conference:

Topic: Carcinoid Heart Disease: What you need to know

When: Saturday, September 24th, 2016 at 8:00AM*

SIGN UP NOW FOR THE 2016 NATIONAL NET PATIENT CONFERENCE in New Orleans, LA from September 22-24th to see Dr. Connolly and 19 other experts speak on Neuroendocrine Cancer! 

Registration is $125 per person including

  • Thursday’s Welcome Reception 
  • Breakfast, Lunch, and snacks for both Friday and Saturday
  • And keep your eyes out for some special prizes!

Registration does not include your hotel stay or travel expenses.

For more information and to buy your ticket, click here!!

*Time and Date are subject to change.

To check out some of our other speakers, click here!

Speaker Spotlight – 2016 National Conference Edition Part 9

drwoltering

Eugene A. Woltering, MD, FACS

Bio:

Eugene A. Woltering, M.D .FACS,is the James D. Rives Professor of Surgery and Neurosciences at the Louisiana State University Health Sciences Center in New Orleans. He also is the Section Chief of Surgical Endocrinology and the Director of Surgical Research at this institution. Dr. Woltering attended medical school at Ohio State University School of Medicine and completed his surgical residency at Vanderbilt University Affiliated Hospitals in Nashville, Tennessee. Dr. Woltering has also completed fellowships in surgical oncology at The OhioState University School of Medicine and the National Cancer Institute. Dr. Woltering specializes in the diagnosis and management of neuroendocrine tumors of the gastroenteropancreatic tract. His research interests include the development of radioactive drugs for the diagnosis and therapy of tumors and the development of human tissue based models that can be used to product drug activity in patients.

To make an appointment, please contact Pam Ryan, RN:

NOLANETS-New Orleans Louisiana Neuroendocrine Tumor Specialists                  200 West Esplanade, Ste. 200                                                                                        Kenner, LA 70065                                                                                                                    (504) 464-8500                                                                                                                               or toll free: (866) 91-ZEBRA

For more information about Dr. Woltering, please visit Oschner Health Center’s website here or his LSU profile here.

For more information on Dr. Gene Woltering and NOLA NETs, please visit their website here.

Dr. Woltering at the 2016 National NET Patient Conference:

Topic: Biomarkers: The Emerging Role of Pancreastatin and Neurokinin A

When: Friday, September 23th, 2016 at 9:45AM*

SIGN UP NOW FOR THE 2016 NATIONAL NET PATIENT CONFERENCE in New Orleans, LA from September 22-24th to see Dr. Woltering and 19 other experts speak on Neuroendocrine Cancer! 

Registration is $125 per person including

  • Thursday’s Welcome Reception 
  • Breakfast, Lunch, and snacks for both Friday and Saturday
  • And keep your eyes out for some special prizes!

Registration does not include your hotel stay or travel expenses.

For more information and to buy your ticket, click here!!

*Time and Date are subject to change.

To check out some of our other speakers, click here!

National Cancer Survivors Day 2016

whywecelebratencsd

Happy National Cancer Survivors Day!

“There are nearly 14.5 million people living with and beyond cancer in the U.S. today, and more than 32 million cancer survivors worldwide. On Sunday, June 5, 2016, communities around the world will gather to recognize these cancer survivors as part of the 29th annual National Cancer Survivors Day®.

National Cancer Survivors Day® is an annual worldwide Celebration of Life that is held on the first Sunday in June. It is the one day each year that people around the world come together to recognize the cancer survivors in their community, to raise awareness of the challenges these survivors face, and, most importantly, to celebrate life.

According to the National Cancer Survivors Day Foundation, administrator for the celebration, “A ‘survivor’ is anyone living with a history of cancer – from the moment of diagnosis through the remainder of life.””

To read the official press release on National Cancer Survivors Day, please click here.

For more information reguarding National Cancer Survivors Day, the National Cancer Survivors Day Foundation, and what you can do to celebrate, please visit www.ncsd.org.

I’m so thankful to be one of the millions of survivors who are able to celebrate this day!

helloiamasurvivor

Tell me how YOU are celebrating today!

Speaker Spotlight – 2016 National Conference Edition Part 7

drmetz

David C. Metz, MD

Professor of Medicine
Division of Gastroenterology
Hospital of University of Pennsylvania
Philadelphia, PA

pennmedicine

Bio:

Dr Metz is Professor of Medicine and Associate Chief for Clinical Affairs in the Division of Gastroenterology at the University of Pennsylvania in Philadelphia, where he is director of the Acid-Peptic Disease Program and codirector of the GI Physiology Laboratory, the Swallowing Disorders Program and the Neuroendocrine Tumor Program.

He is actively involved in clinical research, patient care, and teaching of students, residents, and fellows. Dr Metz’s clinical research program is particularly active in acid-peptic conditions including hypersecretory states such as Zollinger-Ellison syndrome, Helicobacter pylori infection, nonsteroidal anti-inflammatory drug gastropathy, and gastroesophageal reflux disease. He also has particular expertise in the diagnosis and management of patients with functional and non-functional neuroendocrine tumors of the pancreas and alimentary tract. He has been a principal investigator on a number of trials evaluating upper gastrointestinal disease states. He is also active in national gastroenterology societies and was a prior member of the Liason Committee for Recertification of the American Board of Internal Medicine (American Gastroenterological Association representative) and the US Food and Drug Administration Gastrointestinal Drugs Advisory Committee. He is vice chair of the North American Neuroendocrine Tumor Society (NANETS)

Dr Metz earned his MBBCh (MD equivalent) from the University of the Witwatersrand in Johannesburg, South Africa. He moved to the United States in 1986 and pursued a residency in internal medicine at Albert Einstein Medical Center in Philadelphia. He completed a fellowship in gastroenterology in Washington, DC, in the combined Georgetown/Veterans Affairs Medical Center/National Institutes of Health (NIH) program. He remained on staff at the NIH for 2 more years as a senior staff fellow, performing basic research in pancreatic acinar cell secretion and clinical research in Zollinger-Ellison syndrome specifically.

In 1993, Dr Metz moved to Philadelphia in the role of Assistant Professor in the clinician educator track at the University of Pennsylvania. He was promoted to Associate Professor in 1998 and Full Professor in 2003.

To make an appointment, please contact:

Bonnie Bennett at (215) 349-5562

Perelman Center for Advanced Medicine                                                                        South Pavilion, 4th Floor                                                                                                        3400 Civic Center Boulevard                                                                                 Philadelphia, PA 19104                                                                                                            (800) 789-PENN (7366)

For more information on Dr. David Metz and Penn Medicine at the University of Pennsylvania, please visit their website here.

Dr. Metz at the 2016 National NET Patient Conference:

Topic: The Role of the Gastroenterologist in Diagnosing and Treating NETs

When: Friday, September 23th, 2016 at 10:15AM*

SIGN UP NOW FOR THE 2016 NATIONAL NET PATIENT CONFERENCE in New Orleans, LA from September 22-24th to see Dr. Metz and 19 other experts speak on Neuroendocrine Cancer! 

Registration is $125 per person including

  • Thursday’s Welcome Reception 
  • Breakfast, Lunch, and snacks for both Friday and Saturday
  • And keep your eyes out for some special prizes!

Registration does not include your hotel stay or travel expenses.

For more information and to buy your ticket, click here!!

*Time and Date are subject to change.

To check out some of our other speakers, click here!

Novartis Carcinoid Syndrome Quality of Life Survey

Happy Wednesday!

Today, Novartis Pharmacuticals has released a quality of life survey for NET patients diagnosed with Carcinoid Syndrome.

This survey is two parts and is said to be about 30 minutes long. For taking the first part, which you take immediately, you will be gifted a $20 Amazon gift card in 5-10 business days via email for your time. The second part is to be completed at a later date.

***My experience with the survey only took me about 10-15 minutes at most to complete!***

Here is the information:

QUALITY OF LIFE OF INDIVIDUALS WITH CARCINOID SYNDROME SYMPTOMS

Analysis Group is conducting an online survey study to understand the quality of life of patients with Carcinoid Syndrome and its symptoms. Your participation will advance the knowledge in this field. You will also receive a $20 gift card for Amazon.com for completing each survey, as a compensation for your time.

The Study

Analysis Group is seeking patients with Carcinoid Syndrome to share their experience through a two-part anonymous online survey. The first survey can be completed immediately and you will be invited to take a follow-up survey in 6 months. This study is non-interventional and will not require you to do anything beyond completing online survey questions about your experience with Carcinoid Syndrome symptoms. Analysis Group will email you a $20 gift card for Amazon.com within 5-10 business days of completing each survey.

To Participate

If you answer “Yes” to all the questions below, we welcome your participation in the online survey.

Have you been diagnosed with Carcinoid Syndrome (i.e., pattern of symptoms sometimes seen in people with carcinoid tumors)?

Have you ever experienced any of the following Carcinoid Syndrome symptoms (i.e., symptoms caused by a carcinoid tumor’s secretions of large amounts of the hormone serotonin)?

□ Carcinoid diarrhea

□ Carcinoid heart

□ Cramping

□ Cyanosis

□ Flushing

□ Peripheral edema

□ Wheezing

Are you at least 18 years of age?

Would you be able to spend 30 minutes to complete the survey?

Your participation is voluntary. Your responses expressed during the online survey session will be kept strictly confidential. Please direct any inquiries about the study to qol@analysisgroup.com.

To participate in the study and complete the online survey, please visit the survey link:

https://carcinoidsyndrome.healthresearchstudy.net/…

This research is funded by Novartis. Thank you in advance for your consideration

This is for patients in the USA only.