Welcome to CACNETS!

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Welcome to the Capital Area Carcinoid Cancer/Neuroendocrine Tumor Survivors’ group (CACNETS) of the DC, VA and MD region.  Founded in 2001, CACNETS is open to NET patients, families and caregivers.  We meet monthly for mutual support and to learn more about this rare disease and the latest treatments.  For dates of meetings and planned topics, please see the dates listed below, and visit our Meetings page for more information — or contact us at CACSNETS@gmail.com.

2021 CACS Meetings

Given changing Coronavirus Pandemic meeting guidelines, and given concern for members with compromised immune systems, we will meet virtually until there is adequate re-assurance we can meet safely in person. We are, however, planning to “bring” additional NET specialists and clinicians into our meetings via Zoom during some of these upcoming sessions.

2021 Meeting Dates (first half of year)

  • April 10th Join us for our fourth meeting of 2021 by virtual  secure link, which will be sent to you in the meeting notice email.  IF YOU ARE NOT ON OUR LIST AS A MEMBER (no cost to attend or join) PLEASE send an email to us at CACSNETS@gmail.com with your email address, name and phone number. (all information is kept strictly confidential).

  • May 8th

  • June 12th

Other Events and News:

  • Now Available: Videos of the UPENN March, 2021 Annual NET Conference: This virtual conference addressed the personal and medical issues of those whose lives have been affected by neuroendocrine tumors. The agenda and list of the 30+ expert speakers can be found here.   The 10 videos of the full-day event can be accessed HERE.  Videos of last year’s event can be found on our “past events” page.

  • North American Neuroendocrine Tumors Society (NANETS) issued Guidance on Covid-19 Vaccinations for NET patients on Feb 6th, 2021.  Click HERE for Details

Whether you’re living with NETs alone or supported by a family, THIS webinar is for you. If you know someone living with NET or ANY type of cancer, THIS webinar is for you! If you’ve ever uttered the words “Please let me know if there is anything I can do to help” THIS webinar is for you!

  • Saturday Nov 7th Annual NET Cancer Day Symposium (Recorded)

    LACNETS’ November, 2020 half-day event featured four NET experts, a live Q&A, patient stories & more!    Topics included “NETS 101”, Patient Stories, Information on Clinical Trials, NET Research, “Living with NETS and COVID-19,” and information on Caregiving.  Find the Agenda, and a link to the youtube recording HERE

    Find more links to LACNETS educational recordings HERE

  • November 14th, 2020 – Expert NET Dietician, Tara Whyand recorded presentation.

Tara Whyand, the Internationally respected NET Dietician, presented to CACNETS in November, 2020.  Ms. Whyand, who worked at The Royal Free Hospital in London for 8 years, is on the advisory board for the ENET’S Nurse and Dietitian Group and Neuroendocrine Cancer UK, and recently presented at the MENETS symposium in Israel.  Ms. Whyand has researched and written multiple articles on dietary factors related to NETs, somatostatin analogue use, IBD and other gastrointestinal disorders, respiratory disease, as well as breast, prostate and pancreatic cancers. Currently in private practice, she offers her services via video consultation to NET patients worldwide.  Watch Ms. Whyand’s Nov 14th presentation to CACNETS HERE

  • CACNETS NET Information and Useful NET Information Resources List (click Here)

  • Thursdays –Luncheon with the Experts Facebook Live video event at Noon produced by Carcinoid Cancer Foundation (the Carcinoid Cancer Foundation).  CCF’s Facebook site also has an extensive video library of past presentations by leading NET Experts and cover multiple topics. https://www.facebook.com/Carcinoid/videos/

  • NANETS COVID-19 Guidelines (2020): The North American Neuroendocrine Tumor Society, the professional society for NET clinicians, published Covid-19 recommendations and considerations for NET patients.  To read the recommendations and to watch the video discussion by 10 leading NET specialists, use the following links: 1) Guidelines and 2)  Information Video with 10 NET experts

  • Carcinoid Cancer Foundation Facebook Live Recording: The value of support groups, hosted by CCF with NorCal CarciNETS’ president Josh Mailman.  View the webcast Here.

  • 2020 UPenn Medicine NET Symposium – Video of March, 2020 half-day conference  This conference featured multiple NET physicians / clinician experts and covered many topics. (Agenda and Video

  • NETRF Podcast Series and Print Resources:The Neuroendocrine Tumor Research Foundation offers an array of patient resources, including a podcast series with topics ranging from inforamtion for the newly diagnosed to medical, surgical and nuclear medicine treatments.  Find the information at the NETrf site

  News:

    • FDA just approved a new PET scan radioactive tracer, DetectNET (Copper 64Cu dotatate) from Curium Phara.  Further, studies show 64Cu dotatate to be superior to 68Ga for identifying NET tumors.  Read the News Release HERE.  Read the 64Cu comparison to 68Ga on PubMed HERE
    • Early Phase II Trial Results to Treat Aggressive NETS Tumors show promise. Read results here

NIH Rare Tumor Research Study – Now Operational.  For details and to apply, click here

NIH primary contact for Rare Tumor Study Program:

Iqra Ahmad, BS, RN
Research Nurse Coordinator
Gastrointestinal and ACC/NET Oncology Branch (TGMB, DTB)
National Cancer Institute  
NIH Building 10, Room 8D44
10 Center Drive Bethesda, MD 20892
Office: (240) 858-3153
Direct Line (NIH Cell): (301)-503-1105
Fax: (301) 480-2462
Email: iqra.ahmad@nih.gov

  • NET Vitals Form- Physician Conversation Prep Sheet – Available on the LACNETS (LA support group’s) website

  • PRRT Was Approved January 26, 2018:  The targeted NETs therapy, Peptide Receptor Radionuclide Therapy (PRRT) was approved under the FDA’s orphan drug designation. For full details, see the Advanced Accelerator/Novartis site

  • More PRRT News:  “Long-lasting radionuclide therapy for advanced neuroendocrine tumors proves effective”    Click here to see the full article.

In Memory – Mitch Berger

On November 10th, 2019, International NETs Awareness Day, Mitch Berger — our friend, mentor and a founder of the CACNETS group — passed away after his 20+ year fight with NETs. Mitch led a fascinating life.

Mitch’s commitment to help others by sharing his experience and knowledge was manifest in his dedication to the support group that he started for NETs patients in the Washington, D.C. area with Bea Lehming in 2001 – presently known as CACNETS (Capital Area Carcinoid/Neuroendocrine Tumors Support group).  After Bea passed, Mitch took on the leadership role – despite his own medical ups and downs with the disease.  He was always there for members and newly diagnosed patients to help them navigate their own journeys with NETs.  Even while in hospice care (which he strongly supported due to its many benefits in facing our inevitable ends), Mitch helped hundreds of NETs patients with posts on Facebook and in consultation with the changing leadership of CACNETS.  Donations in his memory can be made to CACNETS and other NETs groups.

Please read his full tribute, and learn where you can donate funds to help fight NETs HERE

And, to make donations to any of the NET support and research organization – whether as just a donation or in honor or in memory of someone in particular, click HERE for information.

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Immediate Upcoming Events include: TBD

 

 

Recent Special Speakers  

Visit our News & Resources for presentations and webinars from the Carcinoid Foundation, Dr. Amit Tirosh, Dr. Edward  Wolin, Dr. Naris Nilubol, Drs. Sue and Thomas O’Dorosio, and more.