Welcome!

 

NOTICE : See the email that was issued this morning 10/10 for the updated October Meeting Zoom Link

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 visit our Meetings page or contact us at CACSNETS@gmail.com.

2020 CACS Meetings

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

  • Oct 10th – Patient Sharing
    This session will be a virtual “Zoom” / tele-conference meeting.  Current members should watch for an email from our Gmail account for log-in details.  If you are a new NETs patient or caregiver, or just new to our group, send us an email at CACSNETS@gmail.com to request that we send you the secure sign-in link.

  • November 14th – Topic TBD

    We hope to make our November meeting special as it is just 4 days after World NET Cancer Day (which is November 10th),  The annual, awareness-raising event is coordinated by the International Neuroendocrine Cancer Alliance (INCA), which aims to raise awareness of NET cancers and to voice the needs of NET community for improved diagnostics, information, care and research.  Stay tuned for details as we work to manage Covid-19 health risks via virtual meetings plus try having a special event.

Other Events and News:

  • 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/

  • Dietary Information For NETs patients For Details and links to recordings, Click HERE

  • NANETS COVID-19 Guidelines: 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’ presidentJosh Mailman.  View the webcast Here.

  • 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:

    BJ Thomas, RN [C],  Clinical Research Nurse III
    Rare Tumor Initiative
    10 Medical Center Drive
    Building 10, Room 1-3750
    Bethesda, MD  20892
    Office: 240-858-3633
    Cell:  301-676-0334
    Fax:  301-480-5147
    Barbara.thomas2@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, 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.

infographic-do-you-have-a-net

Get a large copy of this infographic and Learn more about Carcinoid/Neuroendocrine Tumors

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.