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!!

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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.

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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!

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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:

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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!

At the 2016 National NET Patient Conference, Laughter is the BEST Medicine!

Looking for a few laughs on Friday night at the National NET Patient Conference?

NCAN is so excited to finally announce the Friday night social event sponsored by NCAN for the 2016 National NET Patient Conference taking place in just a few weeks! This is a great time to network and relax, taking a break from all the heavy information that will be introduced over this amazing, jam packed weekend!

Introducing Emmy Award winning writer, speaker, comedian and fellow cancer survior Steve Mazan:

stevemazan

Come enjoy a hysterically funny show- ‘Laughter is the Best Medicine’- just for attendees of the 2016 National Neuroendocrine Cancer Patient Conference, starring Emmy Award winning writer, speaker, comedian and fellow neuroendocrine cancer survivor Steve Mazan. Steve is known for his Emmy Award winning writing for The Ellen DeGeneres Show and for performing his comedy on The Late Show with David Letterman, BUT he is most well known for his award winning film, ‘Dying to Do Letterman.’ 

Steve will be hanging out with the crowd, signing autographs, and he will have some merchandise to give away! There will also be a raffle where you can win an autographed DVD of one of Steve’s best shows!

On your way to the show, from 5 pm to 6:15 pm, stop for some healthy and delicious smoothies and cookies provided by one of the conferences sponsors. These tasty treats were designed specifically with neuroendocrine cancer patients in mind. Doors to the show will open at 6 pm and light refreshments will be served. At 7, it’s time for the show, sponsored by the Neuroendocrine Cancer Awareness Network! 

It’s all happening right in the same hall as Friday’s General Session so it’s easy to get to. This is a great time to network and relax, taking a break from all the heavy information that will be introduced over this amazing, jam packed weekend!

Want to learn more about Steve? Visit SteveMazan.com or check out DyingtoDoLetterman.com for more information on Steve Mazan, his cancer journey, and to check out Dying to Do Letterman. Also, check out this Ted Talks that Steve Mazan did back in 2011: It’s Never too Late to Live your Dreams.

For more information on the 2016 National NET Patient Conference in New Orleans, LA September 22nd, 2016 to September 24th, 2016, please click here!

NCAN Bandaid

Wednesday Thoughts…

Happy Wednesday!

I came across this funny cartoon that I thought I would share.

googledoctor

This little cartoon is a reminder that WE usually are and should be the MOST informed person in the room about our disease. Just because a doctor says that they “know” about NET Cancers doesn’t really mean that they KNOW about NET Cancers.

Nothing truly scares me more than when a patient of any kind just 100% trusts a doctor, believing that doctors know everything so they don’t want to know or need to know the ins and outs of their disease because a doctor wouldn’t steer them wrong. The only truth in that manner of thinking is that a doctor wouldn’t be purposely steering you wrong.

Think about this: Yes, doctors go through a ton of schooling to become knowledgeable overall about anatomy and physiology and even a specific specialty but there is so much to learn about the human body that they cannot possibly learn everything there is to know about it in that time period. So maybe, if we’re really lucky, they possibly heard Carcinoid or NET Cancer once in their schooling but it’s honestly not all that likely that they remember the one time it was mentioned.

Seeing a doctor who will not continuously educate themselves to help treat you is detrimental to your health. It is so important to work with doctors who are open to being educated and up-to-date on the newest treatments and what options are out there. They should be open to your opinion and what you bring to the table because NO ONE will fight for you the way that YOU fight for you. Your care should be treated as a team, not a one person show.

There are so many ways to educate yourself. Join support groups, both online and in-person. Connect with other patients. (PLEASE be careful with what information you read and take online. Remember that every NET patient is different and not everything you see on the internet is true!) See a NET specialist, or TWO. Most importantly, take advantage of seeing NET specialists speak at conferences, not only do they help with the basics but they give you the most current information there is out there about our disease!

What you don’t know can harm you.

NCAN has our huge 2016 National NET Patient Conference coming up this September! This conference gives you the chance to connect with 500+ patients and caregivers with 20+ speakers in the NET specialty over 2 and 1/2 days! It is such an informative, important, and fun weekend!

For more information, click here.

To register directly, you may do so, here.

Until next time…

Tricia

The latest on Peptide Receptor Radionuclide Therapy (PRRT) as of March 23, 2016

Happy Saturday, Zebra family! I hope everyone is having a great weekend!

As many may already know, because this is a week and a half later than I would’ve liked (Yay for being a new blog and having so much content to get up this week!), on March 23rd, 2016, there was some breaking news concerning PRRT here in the USA:

“AAA Opens Lutathera Expanded Access Program In U.S. to Eligible Patients And Announces Forthcoming NDA Filing to FDA and EMA

AAA today announced that the company has initiated an expanded access program (EAP) in the United States for the investigational product, Lutathera. Through the program, Lutathera is being made available for patients suffering from inoperable, somatostatin receptor positive, midgut carcinoid tumors, progressive under somatostatin analogue therapy. Healthcare professionals and patients can learn more about the Lutathera EAP by visiting www.clinicaltrials.gov (trial number: NCT02705313).” (Direct link here)

To read or download the whole article, click here.

For more information on Advanced Accelerator Applications (AAA), click here.

For those of you who would like to learn about PRRT, please read my intro to PRRT post for more information!

Best,

Tricia Wahmann-Knatz

Introduction to PRRT

What is PRRT? Peptide Receptor Radionuclide Therapy (PRRT) is a molecular targeted therapy used to treat the NET tumors such as gastroenteropancreatic NET tumors (Carcinoid/stomach, intestines, and pancreas), small cell carcinoma of the lung, and other tissues of the neuroendocrine system, such as pheochromocytoma (a rare tumor on the adrenal glands). The goals of PRRT are to treat symptoms, to slow or stop the progression of NET tumors, and improve overall quality of life. Candidates for PRRT are patients who have advanced NET tumors (mainly grades 1 and 2), are not candidates for surgery, and patients who have not had symptoms respond to other treatments.

So, how does it work? Tumor cells have peptide receptors on located on the outside. In NET tumors, this receptor is called the somatostatin receptor. A lab-created somatostatin protein (octreotide) is binded with a small amount of lutetium (a radioactive particle). When injected into the bloodstream, this mixture binds to the tumor via the somatostatin receptor and treats the tumor from the inside, delivering a high dose of radiation to the tumor.

*Please remember to discuss all medical options with a NET specialist. This is so important in finding the correct treatment plan for you.*

Here are some sources to learn more about PRRT:

www.prrt-treatment.com

www.snmmi.org

www.prrtinfo.org

 

Best,

Tricia Wahmann-Knatz