NETCancerAwarenessBlog

Wednesday Thoughts…

~ Tricia Wahmann-Knatz ~ 2 Comments

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 Speaker Spotlight – 2016 National Conference Edition Part 2

~ Tricia Wahmann-Knatz ~ 1 Comment

drramirez

Robert Ramirez, DO, FACP

oschnermedcenterlogo

Bio:

Dr. Ramirez earned his medical degree from the University of Medicine and Dentistry of New Jersey School of Osteopathic Medicine.  He completed an internal medicine residency at Cooper University Hospital in Camden, New Jersey.  He then completed a combined hematology and medical oncology fellowship at the University of Tennessee Health Sciences Center in Memphis, Tennessee where he served as chief fellow.   He is board certified in medical oncology and internal medicine.  He is a Fellow of the American College of Physicians (FACP) and a member of American Society of Clinical Oncology (ASCO), International Association for the Study of Lung Cancer (IASLC), and the North American Neuroendocrine Tumor Society (NANETS). 

He has clinical and research interests in lung cancer, specifically non-small cell and small cell cancers as well as neuroendocrine tumors of the lung including DIPNECH, typical and atypical carcinoids.  He has given multiple presentations at National and International meetings on the topics of lung cancer and neuroendocrine tumors and has multiple peer reviewed publications.  He is a recognized thought leader in these fields. He splits his clinical and research duties between the Ochsner Lung Cancer Multidisciplinary Program and the Ochsner Kenner/LSU Multidisciplinary Neuroendocrine Clinic.  He is active in clinical trial design as well as teaching to fellows, residents and medical students.  

Dr. Ramirez’s clinical interests include: Non-small cell lung cancer, small cell lung cancer, neuroendocrine tumors of the lung, DIPNECH and neuroendocrine tumors of the GI tract.

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 on the NOLANETS Group and Dr. Robert Ramirez, please visit their website here.

Dr. Ramirez at the 2016 National NET Patient Conference:

Topic: LungNETs and DIPNECH: Diagnosis and Therapy

When: Friday, September 23rd, 2016 at 3PM*

Note on topic from Dr. Ramirez:

“I am slated to give an overview of neuroendocrine tumors of the lung.  I have a particular interest in lung cancer and specifically all forms of neuroendocrine lung tumors ranging from DIPNECH to small cell.  This is an under represented portion of neuroendocrine tumors not only in research but in general awareness.”

SIGN UP NOW FOR THE 2016 NATIONAL NET PATIENT CONFERENCE in New Orleans, LA from September 22-24th to see Dr. Ramirez 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.

You can also see Dr. Ramirez speak about the Basics of Lung Neuroendocrine at the 2016 LungNET Conference on Saturday, June 11th, 2016 in Denver, CO!!

Registration for the 2016 LungNET Conference is $25 per person and includes breakfast, lunch, and snacks!

Registration does not include your hotel stay or travel expenses.

For more information and to buy your ticket to the 2016 LungNET Conference, click here!

Want the chance to see BOTH amazing conferences? Sign up NOW to get FREE registration for the 2016 LungNET Conference when you register for the 2016 National NET Patient Conference. SEE HOW TO GET FREE REGISTRATION TO THE 2016 LUNGNET CONFERENCE!

Be sure to check out our Speaker Spotlight on Dr. Ed Wolin!

Bring Light to NETs Campaign!

~ Tricia Wahmann-Knatz ~ Leave a comment

Introducing the Bring Light to NETs Campaign!

Raise Awareness for Neuroendocrine Cancer!

A lot is happening in the NET Cancer world this year. There are new treatments being poised for approval and several great events for awareness are in the midst of being planned to BRING LIGHT TO NET CANCER!

NCAN’s goal is to make sure that EVERYONE knows about this deadly disease.

YOU can be a part of this effort by wearing and sharing some great awareness items!

All orders recieved get special pricing PLUS a FREE gift, PLUS FREE shipping (inside the US) AND for your purchase of $20 or more, you also get a FREE t-shirt!! ***For orders outside of the US, please see details down below.

Check out your NET Cancer Awareness items HERE!!

Be sure to check back often, as NCAN will be introducing new items soon!

***For orders outside of the US, please email info@netcancerawareness.org***

 

The Speaker Spotlight – 2016 National Conference Edition

~ Tricia Wahmann-Knatz ~ 2 Comments

Welcome to the NETCancerAwarenessBlog’s first of the Speaker Spotlight Series-2016 National Conference Edition!!

drwolin

Edward M. Wolin, MD

Director, Neuroendocrine Tumor Program, Montefiore Einstein Center for Cancer Care

Montefiore

Department: Oncology

Bio:

Edward M. Wolin, MD is an internationally recognized Neuroendocrine Medical Oncologist. Patients from all over the United States and abroad come to see him for access to personalized care and the latest diagnostic and therapy programs.   

Dr. Wolin graduated from Reed College in Portland, Oregon, and received his MD degree From Yale School of Medicine at Yale University in New Haven, Connecticut.  After serving as intern and resident in Internal Medicine at Stanford University, he became a clinical fellow at the National Cancer Institute in Bethesda, Maryland.  He returned to Stanford to complete his Fellowship in Medical Oncology before starting his academic career at the faculty of Washington University School of Medicine in St. Louis, Missouri.

Dr. Wolin was previously the Director of Neuroendocrine and GI Oncology Program and the Director of Clinical Research at the University of Kentucky Medical Center.  For the preceding 26 years, he held key positions at Cedars–Sinai Medical Center in Los Angeles, where he founded and directed of one of the largest and most productive Carcinoid and Neuroendocrine Tumor Programs in the country.

Clinical Focus:

Dr. Wolin treats all types of carcinoid and neuroendocrine tumors, ranging from tumors of the small intestine (carcinoid), pancreas, lung and colon to those of the rectum, appendix, stomach and other sites. These include hormone-producing tumors such as carcinoid (serotonin), gastrinoma (gastrin), insulinoma (insulin), glucagonoma (glucagon), VIPoma (VIP); liver metastasis, and carcinoid syndrome. 

Dr. Wolin is a critical member of Montefiore’s outstanding multidisciplinary neuroendocrine team, that includes medical oncologists, surgeons, gastroenterologists, endocrinologists, as well as specialists in nuclear medicine, interventional radiology, diagnostic radiology, and other areas.

Research Focus:

As Director of the Neuroendocrine Tumor Program at Montefiore Einstein Center for Cancer Care, Dr. Wolin brings a robust research program to Montefiore that supports multiple clinical trials. His research efforts focus on finding the most effective and least toxic treatments, such as pasireotide, lanreotide, everolimus, other m-TOR inhibitors, targeted radiation, including peptide receptor radiotherapy with Lu-177.

Dr. Wolin has pioneered the development of neuroendocrine tumor therapy with novel somatostatin analogs, mTOR inhibitors, anti-angiogenic drugs, and peptide receptor radiotherapy (PRRT) using 177Lu-DOTATATE, as well as PET imaging with 67GA-DOTATATE scanning.

His research also pursues new directions in immunotherapy, anti-angiogenic drugs, novel targeted biologic anti-cancer treatments, as well as targeted treatment of liver metastases. In addition, Dr. Wolin directs his research towards the development of new imaging and diagnostic procedures for carcinoid/neuroendocrine tumors.

To make an appointment, please call:

Montefiore M-E Center for Cancer Center                                                                         1521 Jarrett Place                                                                                                                  Bronx, NY 10461-2601                                                                                                            (718) 862-8840

Dr. Wolin at the 2016 National NET Patient Conference:

Topic: The Role of Chemotherapy in Well-Differenciated NETs

When: Friday, September 23, 2016 at 2PM*

Be sure not to miss Dr. Wolin speak! And don’t miss him on our panel answering your questions!!

For additional info on Dr. Ed Wolin, please see his profile here.

If you would like to read some of Dr. Wolin’s pulications on PubMed, you can do so here.

SIGN UP NOW FOR THE 2016 NATIONAL NET PATIENT CONFERENCE in New Orleans, LA from September 22-24th to see Dr. Wolin 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.

A Reminder for Self-Care

~ Tricia Wahmann-Knatz ~ Leave a comment

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.

 

TheMighty_logo_800x800

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

NET Cancer in the News!

~ Tricia Wahmann-Knatz ~ Leave a comment

This week already we have seen several very exciting things happening overseas. Here’s a snapshot and links for more information:

Last Thursday, March 31st 2016, UCLA reported that their  scientists at the UCLA Eli and Edythe Broad Center of Regenerative Medicine and Stem Cell Research were able to pinpoint the gene responsible for Neuroendocrine Prostate Cancer.

“UCLA scientists pinpoint cancer gene responsible for neuroendocrine prostate cancer

Study defines a possible target for future treatments for a deadly form of the disease

Scientists at the UCLA Eli and Edythe Broad Center of Regenerative Medicine and Stem Cell Research have discovered that a protein produced by a cancer gene leads to the development of a deadly, late-stage form of prostate cancer called neuroendocrine prostate cancer. The discovery could be a significant step toward a more effective treatment.

The findings, which were published in the journal Cancer Cell, are particularly important because neuroendocrine prostate cancer does not respond to standard treatments, and men who are diagnosed with the disease typically live for less than a year afterward. Up to one-quarter of those who die of prostate cancer have the neuroendocrine subtype.

“Identifying the cellular changes that happen in cancer cells is key to the development of drugs that inhibit those changes and thereby stop the progression of the disease,” said Dr. Owen Witte, founding director of the UCLA Broad Stem Cell Research Center and the study’s lead author. Witte also is a Howard Hughes Medical Institute investigator and a member of the President’s Cancer Panel, which reports to President Barack Obama.”

You can read the rest of the article from UCLA here.

On Tuesday, April 5th, 2016, iCancer announced and posted the following on their Facebook page an update concerning the AdVince virus and their trials in Uppsala, Sweden:

“INCREDIBLE UPDATE

This is a photograph of the iCancer (AdVince) virus finally leaving the freezer and heading for the first patient.

Thanks to your contributions the iCancer (AdVince) clinical trial has begun this month.

The Financial Times recently declared it the most successful crowdfunded medical trial ever. The campaign went global and viral and trended on Twitter – as we hoped and intended.

As we reported Vince Hamilton, having seen the publicity around the campaign, stepped forward and made up the funding gap.

The potential treatment, an oncolytic virus for neuroendocrine tumours which (potentially) targets and destroys the cancer cells and amplifies the anti-cancer cell immune response, is named Advince, in honour of Mr Hamilton.

The trial is a phase I/II trial focused on safety.

We simply cannot thank you enough.

Without you all this trial would not be taking place. And a potential treatment would still be sitting on the shelf in a freezer in Sweden.

Please stay tuned for further updates (including a film of the first patient) over the coming weeks.”

12970823_1297476063599131_3527987088098281981_o

For more information on iCancer, please visit their website here and their Facebook page here!

We will be keeping a very close eye on this news as they both progress in the next stages!

Introducing the Speaker Spotlight series!

~ Tricia Wahmann-Knatz ~ Leave a comment

TheSpeakerSpotlight

Starting this week, I will be introducing you to the speakers of NCAN’s upcoming events in a new series, Speaker Spotlight. Speaker Spotlight will be ongoing for all future events.

This series will be used to:

  • Give you backround information on who the presenter is,
  • An introduction to the topic they are presenting on,
  • and how to set up an appointment or contact them.

Also, I will be periodically including Q&As with the speakers themselves or blurbs of information directly from them and get them involved!

Be sure to follow the NETCancerAwarenessBlog so you don’t miss out!

You can find NETCancerAwarenessBlog on Facebook and Twitter!!

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

~ Tricia Wahmann-Knatz ~ Leave a comment

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

Lexicon Submits New Drug Application to FDA for the Treatment of Carcinoid Syndrome

~ Tricia Wahmann-Knatz ~ Leave a comment

BREAKING NEWS!!

Yesterday, March 30th, 2016, Lexicon Pharmaceuticals submitted a new drug application to the FDA for treatment of Carcinoid Syndrome!

Here is some of their press release:

“The Woodlands, Texas, March 30, 2016 – Lexicon Pharmaceuticals, Inc. (Nasdaq: LXRX) today announced that it has submitted a New Drug Application to the U.S. Food and Drug Administration seeking approval for the marketing and sale of telotristat etiprate, an oral drug for the treatment of carcinoid syndrome. The FDA has a 60-day filing review period to determine whether the NDA is complete and acceptable for filing. Lexicon has requested a Priority Review by the FDA as part of the NDA filing.

“The filing of the NDA for telotristat etiprate brings us one step closer to the possibility of bringing this innovative new investigational treatment to the market to improve the lives of the community of patients and caregivers who live with carcinoid syndrome on a daily basis,” said Lexicon President and Chief Executive Officer, Lonnel Coats. “We look forward to working closely with the FDA during the review process.”

The NDA filing is supported by the results from TELESTAR, a pivotal Phase 3 clinical trial of telotristat etiprate in patients with carcinoid syndrome, and TELECAST, a Phase 3 companion study to TELESTAR. Results from TELESTAR demonstrated a statistically significant reduction from baseline compared to placebo in the average number of daily bowel movements over the 12-week study period (p<0.001), meeting the study’s primary endpoint. Top-line results from TELECAST demonstrated a statistically significant reduction in urinary 5-hydroxyindoleacetic acid (5-HIAA, the main metabolite of serotonin) at week 12 (p<0.001) as compared to placebo, meeting that study’s primary endpoint. The proportions of patients with treatment-emergent adverse events, serious adverse events and discontinuation due to adverse events were generally similar between the telotristat etiprate and placebo arms in both studies.

Carcinoid syndrome is a rare disease affecting thousands of cancer patients with metastatic neuroendocrine tumors (mNETs) that have spread to the liver and other organs from the gastrointestinal tract. The condition is characterized by frequent and debilitating diarrhea that often prevents patients from leading active, predictable lives, as well as by facial flushing, abdominal pain, fatigue and, over time, heart valve damage.”

 

To download the rest of Lexicon’s exciting press release, you can get that here:

Telotristat Etiprate NDA Filing 

More information about Lexicon Pharmaceuticals, Inc. here!

I cannot wait to see where this advancement goes!

Be sure to follow me here and on Facebook for the most up-to-date information!

Until next time…

Best,

Tricia Wahmann-Knatz