Speaker Spotlight – 2016 National Conference Edition Part 7

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David C. Metz, MD

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

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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.

Together Everyone Achieves More

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Last Wednesday, I posted about the importance of knowing the ins and outs of your disease. Today, I’m expanding a little bit on something I said:

Your care should be treated as a team, not a one person show.

According to Merriam-Webster, team is defined as “a number of persons associated together in work or activity, a group on one side.”

Why is having a multidisciplinary medical team so important?

The most important aspect of treating a NET patient is a care plan that it is tailored to suit the individual. Neuroendocrine cancer care can be complex and for the patient the journey can encompass not only a whole host of emotions, but also a wide range of tests, treatments and health care professionals. Since there are often multiple treatment options available throughout the course of the disease, collaboration is essential among all key health care personnel who are making clinical decisions for individual patients.

In order to deliver the highest quality care to individuals with neuroendocrine tumors, a NET cancer patient should be referred to a center where there is a multidisciplinary team. Ideally, this collaborative group would be led by an expert in the field of NET cancers and include physicians from a wide range of specialties. Though patients may not always see an expert with a multidisciplinary team, it is important to have a NET specialist partnering with other physicians the patient is seeing to ensure the best treatment.

Patients feel more confident in the knowledge that all aspects of their care have been discussed and the best possible treatment plan has been formulated. A well-coordinated and disciplined team are a very critical aspect for care when striving to achieve the best quality of life and the most positive outcomes for NET cancer patients.

In the case of a doctor being unwilling to work with a patient’s NET specialist and the rest of their care team, it is crucial to fire this physician and find one who is willing to work as part of the team.

*Please remember that doctors work ***FOR*** YOU and you do not have to stay with any physician who is not giving you the care that you need or deserve! If they aren’t listening to you or other physicians in your care team, please move on. Sometimes we are lucky enough to like a doctor even though they are not providing the best or right care. Liking a doctor is not a reason to stay with them.*

I hope everyone is having a great week! Until next time…

Tricia Wahmann-Knatz

A Reminder for Self-Care

As we approach the weekend, I’ve decided that we need to take a moment to make a post that isn’t exactly directly related to NET Cancer but is important to our overall wellness. Self-care is something that is often overlooked when you are busy seeking treatment and going about your every day trying to live as normal of a lifestyle as possible. This goes for both patients and caregivers alike. Sometimes, we all reach a point where everything about our everyday life becomes too much and we need to take a much needed step back to regroup and relax.

This is where I’m going to get personal. Not only am I the daughter of a NET patient, but I am one myself. Alongside that, I am newly diagnosed with Adrenal Insufficiency (caused by damage to my pituitary by a non-NET related tumor) and have also struggled with chronic pain for pretty much my whole life and some other strange TBD symptoms. With the SAI (Secondary Adrenal Insufficiency), I am currently under trial and error while learning my new “normal” being steroid dependent and it definitely takes its toll on me.

In my middle-of-the-night Facebook browse, I came across this article/blog post in one of my SAI support groups and I couldn’t help but get right on here to share with you all. So here I am at 4AM writing this (you guys won’t see this until probably 8AM EST though)…

The post I’m introducing to you here is “101 Self-Care Ideas for When It All Feels Like too Much“. We ALL definitely relate to this feeling more often than we would like to admit so this is such a great reminder of some ideas that we could try out when we need to give ourselves some TLC, aside from taking care of our physical symptoms.

 

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This post is from a website called The Mighty and I found this site about 2 1/2 months ago around the time I joined in on the AI support groups on Facebook and I’ve pretty much become addicted. The Mighty is a site that features all different independent blog posts submitted by people around the world, all with disabilities, mental illness, rare or chronic diseases and the people who love people with these conditions. It’s amazing to read and I could spend hours and hours reading on here. I’m 100% sure this won’t be the only entry I’ll ever share with you.

I hope you guys enjoy reading this and be sure to try a few of these out. Let me know down in the comments what works well for you, personally, when you find yourself feeling like this.

Until next time..

Tricia