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

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

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

LungNET Conference 2016-Registration is OPEN!

Hey guys,

I hope everyone is off to a great start this week!

We at NCAN, along with The Healing NET Foundation and U.S. Oncology, are so super excited to announce the upcoming LungNET Conference in Denver, CO, featuring 8 world renowned doctors presenting the information you need, on Saturday, June 11th, 2016! The conference will be at the Denver Marriott City Center from 8AM to 5PM. Registration is $25 per person and included in this fee is breakfast, lunch and snacks.

Take a look at this amazing line up:

8:30 – 8:45:  WELCOME & Introductions to NCAN and HNF – Dr. Eric Liu, Cindy Lovelace, and Maryann Wahmann

8:45 – 9:30:  Basics of Lung Neuroendocrine – Dr. Robert Ramirez

9:30 – 10:00:  Diagnostics of Lung Neuroendocrine –Dr.  Craig Kornbluth

10:00 – 10:20:  Break

10:20 – 10:50:  Pathology for Lung Neuroendocrine –Dr.  Maggie Ryan

10:50 – 11:30:  Surgery for Lung Neuroendocrine – Dr. Richard Parker

11:30 – 12:00  Pulmonary Medicine for Lung Neuroendocrine – Dr. Majd Kobitary

12:00 – 1:00:  Lunch

1:00 – 2:00:  Medical Therapy Lung Neuroendocrine: Dr.  Kjell Oberg

2:00 – 2:30:  Clinical Trials in ALL Neuroendocrine:  Dr. Allen Cohn

2:30 – 3:00:  Non-Medical Management of Metastatic Disease:  Dr. Charlie Nutting

3:00 – 4:00:  Questions and Answers

Space is very limited so be sure to register here!

The address for the Denver Marriott Center City is 1701 California Street, Denver, CO 80202. We have a room block set up for $139 per night. This room rate is available Thursday to Saturday night. To book a room, you can do so by clicking here or contact the hotel via phone: (303) 297-1300.

Dr. Liu will have extended clinic hours for Wednesday, June 8th through Friday, June 10th. Please book these ASAP as they are also extremely limited and WILL fill up! If you would like to make an appointment, please call (303) 388-4876. If you are coming in before Thursday, ask for the hotel information for their discount for your appointment.

Again, REGISTRATION IS OPEN!

NCAN BandaidHealingNET (3)

We can’t wait to see you there!

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

Big NET Conference – 2016 National NET Patient Conference

Happy Spring Zebra family!

I hope you are having a great start to 2016 and that you are as excited as we are about the amazing events taking place this year! You’ve probably seen the great agenda for the 2016 National Conference in New Orleans, LA in September! We have been super busy confirming our schedule of speakers and getting preparations moving now that we are officially just 6 short months out! This is the first of a series of blogs that I will be posting to give a bit more insight into the process as well as to share the benefits you will get by signing up for this awesome event. For those of you who are new to the NET Cancer community, the National Conference is NCAN’s largest event. These information packed weekends happen every other September and provide NET cancer patients access to 20+ NET specialists from all around the country. Where else can you go to share the latest and greatest updates in 2 and a half days?! And don’t forget- you’re right on the trolley line so you can spend some time soaking up the good food and fun in New Orleans (more on that later, I promise.)

Not only will you have the opportunity to listen to and speak with these specialists during this weekend, you will also a wonderful chance to network with 500+ NET Cancer patients and their caregivers from across the country as well. We all know how great it is to finally connect with those who understand what we experience. This year, there’s a new system, so patients who choose to participate can identify each other by primary site location to aide in the networking process. We are so excited to see how this new system helps and get your feedback on it.

Here’s the full story about this year’s National Conference: It is in New Orleans, LA from September 22nd, 2016 to September 24th at the Hyatt Regency, 601 Loyola Avenue, right next to the Superdome. Registration fee for the 2 ½ day event is just $125 per person and that includes breakfast, lunch, and snacks for Friday and Saturday as well as a free reception on Thursday night. Also included are your event materials- and be sure to watch out for some fun giveaways! Hotel accommodations aren’t included in this price and need to be booked separately (I will leave the link below.) It costs $149 per night (Thursday, Friday, and Saturday) for a double occupancy room and the Hyatt will honor that special rate for two nights prior and two nights following for those who would like to extend their stay. To get our rate, you must book BY August 22nd, 2016. After this date, prices will be at the discretion of the Hyatt and what their rack room rate at the time is.

Please, please, please be sure to register as early as possible because as the date gets closer, we cannot guarantee open spots and cannot guarantee open rooms at the hotel and this conference is one that you don’t want to miss!

You can find registration information, including the itinerary here: http://www.classy.org/BigNETConference

Hotel accommodations can be made here: https://resweb.passkey.com/go/natlCNtumorpatientconference 

Be sure to keep an eye out for my next blog and if you have any questions, please don’t hesitate to send me an email at tricia@netcancerawareness.org or leave me a message on here!

The countdown is on! See you soon…

Until next time,

Tricia Wahmann-Knatz