Call for Nominations: 6th Annual Warner Advocacy Award

Do you know someone who is a passionate advocate for patients with neuroendocrine tumors (NETs)? Novartis Oncology and The NET Alliance are searching for an outstanding NET patient advocate to recognize and honor with the 6th Annual Warner Advocacy Award.

The 2015 Warner Advocacy Award will be given to the individual who best embodies the spirit, passion, and dedication of the late Monica Warner, a driving force behind the Carcinoid Cancer Foundation for two decades and an extraordinary advocate for carcinoid and neuroendocrine tumor patients. Although she passed away in 2009, the spirit of her passion and hard work lives on.

Warner Advocacy Award_2Nominations are now being accepted and all submissions are due by 5 pm, Eastern Standard Time, on Thursday, August 20, 2015.

This year’s award process is different from previous years:

  • a simplification of requirement criteria for nominees
  • an independent committee of diverse professionals will vote for 3 finalists once all nominations are submitted.  The finalists will be announced on November 10 — Worldwide NET Cancer Awareness Day.
  • the public will then vote through a poll on the Warner Advocacy Award website to choose the 2015 winner
  • The winner of the 6th Annual Warner Advocacy Award will be announced in January 2016

The recipient will receive an individual award of recognition (non-monetary) and a donation of $10,000 from Novartis Oncology to an approved, patient-focused 501(c)(3) charitable organization suggested by the awardee.

Nominees may be patients, caregivers or advocates who work in the United States. While Novartis recognizes the contributions and dedication of health care professionals, this award is not intended to be given to a healthcare professional.Warner Advocacy Award 2015_Deadline for Submissions

Nominations will be reviewed for the following criteria:

  • Number of years as an advocate
  • Innovation of patient-focused project(s), examples of these projects include, but are not limited to brochures, awareness outreach, teleconferences, local/regional/national conferences, interactive web activity
  • Number of educational programs hosted yearly, examples of programs include, but are not limited to, webcasts, phone conferences, face-to-face meetings
  • Frequency of interactions with patients (monthly, weekly, several times a week)

Visit the Warner Advocacy Award website at www.warneradvocacyaward.com and fill out the online submission form.

Read more about the previous recipients of the Warner Advocacy Award:

Novartis Oncology and NET Alliance logos

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In Memoriam: Edda Gomez-Panzani, MD

It is with deep sorrow that we learned of the passing of Edda Gomez-Panzani, MD on June 30, 2015. The NorCal CarciNET Community shared a tribute to Edda who “was instrumental in gaining FDA approval for Somatuline (lanreotide) for NETs patients in December 2014.” This wonderful picture of Edda was taken by her dear friend, the late Monica Warner.

In Memoriam: Edda Gomez-Panzani, MD

Dr. Gomez-Panzani, Vice President of Research & Scientific Affairs for Ipsen Biopharmaceuticals, died from cancer at her home in California, surrounded by loved ones. Click here to read her obituary.

The neuroendocrine tumor (NET) community has lost a very special friend and advocate. All of us at the Carcinoid Cancer Foundation extend our deepest sympathies to Edda’s family, friends, and colleagues.

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Did I Take It . . . or Didn’t I?

When it comes to taking pills, drops, injections, and other forms of medication, about one third to one half of U.S. patients do not adhere to prescribed medication regimens (Osterberg and Blaschke, Adherence to Medication, New England Journal of Medicine, August 2005). There are many reasons for this ranging from difficulties in the timing of dosages to cost to potential side effects to feeling better and not completing the full course of the medication. One feature of the new Carcinoid NETs app (read more and download the app) is a Medication Tracker. It helps you track all of your medications, set reminders, record which medications were taken and when, and note if they were skipped and why.

App, CCF_Responsive mock

“If we could develop something to get people to take the medicine we prescribe them, it would have a greater benefit to society than any new drug we could develop,” says Silja Chouquet, who explores in “DE-scribe Medecines,” a TED-X talk, why we don’t take our medication and what we should do about it.

Silja Chouquet is the owner and CEO of whydot GmbH, an agency specializing in social media consulting, coaching and training. Her fields of expertise are the creation of patient-focused social media communications and marketing campaigns. She is also an entrepreneur at Ubercurious, a social media research start-up, which generates insights by combining traditional research approaches with novel data visualization techniques. Silja has worked in different positions at two multi-national pharmaceutical companies.

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10 Highlights for the Carcinoid and Neuroendocrine Tumor Community

Society of Nuclear Medicine and Molecular Imaging 2015 Annual Meeting

  • Congratulations to Dr. Steven Libutti, Director of the Montefiore Einstein Center for Cancer Care, upon being named President of the American Association of Endocrine Surgeons. An internationally recognized surgical oncologist and endocrine surgeon, Dr. Libutti is developing targeted nanoparticle therapies for metastatic neuroendocrine tumors. Read more: http://www.newswise.com/articles/view/634835/?sc=rsmn. The American Association of Endocrine Surgeons has an excellent patient education section on their website, including extensive information on neuroendocrine tumors: http://endocrinediseases.org/index.shtml.
  • More exciting news for the neuroendocrine cancer community!! Ipsen  is acquiring OctreoPharm Sciences, a company developing innovative radiopharmaceuticals for the diagnosis and treatment of neuroendocrine tumors. Read more: http://www.ipsen.com/wp-content/uploads/2015/05/PR-Ipsen-Octreopharm-EN-FINAL1.pdf. David Cox, PhD, Vice President of Medical Affairs at Ipsen, explains how they will develop next generation theranostics for imaging as well as peptide receptor radionuclide therapy, PRRT.

  • Dr. Matthew Kulke, a carcinoid/neuroendocrine tumor specialist from Dana-Farber Cancer Institute in Massachusetts, talks about why progression free survival (PFS) is a good outcome measure for neuroendocrine tumors.

  • If you are a patient working with a local physician who would like to learn more about neuroendocrine tumors, there’s a new CME (continuing medical education) opportunity that you can share with your doctor: New Frontiers and Treatment Advances for Metastatic Enteropancreatic Neuroendocrine Tumors. Drs. Edward M. Wolin and Pamela L. Kunz are the Program Co-Chairs. Click here for more information: http://www.clinicalwebcasts.com/cvr/2015/237.htm. This CME was supported with an educational grant from Ipsen.

CME Metastatic Enteropancreatic Neuroendocrine Tumors

Skyler Nash

  • When Josh Mailman heard the words “you have cancer” he knew that his life and his family’s lives would be forever changed. “Little did I know that my life would be transformed into two of Dr. Seuss’ books – Did I Ever Tell You How Lucky You Are? And Oh, The Places You’ll Go,” writes Josh in his article “Living with a Rare Cancer – My Dr. Seuss World,” published in the ASCO Post. Click here to read the article: http://www.ascopost.com/issues/may-25,-2015/living-with-a-rare-cancer-my-dr-seuss-world.aspx

Josh Mailman ASCO Post article quote_2

  • Special thanks to the NorCal CarciNET Community for sharing this video on Carcinoid and Your Heart with cardiologist Dr. Jerome Zacks from Mount Sinai Hospital and the Carcinoid Heart Center, both in New York City:

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DENIED: Michael Farris’ Journey with Insurance for Neuroendocrine Cancer Treatment

The good news is the very positive result at the end – but the road to getting insurance coverage for Michael Farris’ participation in the PRRT (peptide receptor radionuclide therapy) clinical trial at Excel Diagnostics in Houston, Texas, was fraught with difficulty. Following an initial approval, Michael’s insurance company then denied payment for his treatment. Diagnosed with advanced, metastatic carcinoid cancer in 2005, Michael is sharing his story and offering his assistance to other neuroendocrine cancer patients in a similar circumstance so no one else has to experience what he went through.

Denied stampWhat started with a hot flash at a Rotary Club luncheon when he was 48 years old led to visits with 6 different doctors trying to properly diagnose Michael. While growing slowly in his body for years, carcinoid spread from his colon and gastrointestinal area to his liver and throughout his blood supply. Michael found medical oncologist Dr. Joseph Rubin at the Mayo Clinic in Rochester, Minnesota, where in November 2005 he underwent surgery to remove part of his colon, his appendix, and two-thirds of his liver. The surgery went well but his diarrhea was very bad and he began monthly Sandostatin LAR injections, a treatment needed to control his carcinoid syndrome.

Fast forward to 2013 when Michael felt a knot in his stomach and thought he had a hernia. The scar tissue from his tumors had grown so much they caused two major masses and a bowel obstruction. More surgery was scheduled for May 2013 in which his ileocecal valve was removed. Michael had to retire from his career as a college and high school football official. Carcinoid continued to play a significant role in his life. And Michael knew he needed to be vigilant to control progression of his cancer.

Brenda, Michael’s wife who he describes as his “rock and my compass,” would not allow Michael to have a “pity party.” Instead she has encouraged him to ask “Why not me” rather than “Why me” and to face his rare disease head on. She went with him to every Mayo Clinic visit and helped him to “have hope, confidence, belief, and trust and that you are going to turn over every stone in your path to find the answers. And sometimes there is no answer.”

The next phase in Michael’s journey was to participate in the Indium-111 Octreotide clinical study at Excel Diagnostics in Houston, Texas. Indium-111 Octreotide is a radioactive labeled peptide (small protein) that binds to somatostatin receptors which exist almost exclusively on the surface of neuroendocrine cancer cells. In low doses this is used as a diagnostic imaging test to identify the locations of neuroendocrine tumors (NETs). Significantly higher doses of this agent have been shown to have therapeutic effects on these tumors.

In 2006 Michael purchased a special clinical trial rider on his insurance policy, held by Golden Rule, a United Healthcare Company. Thus, he expected his participation in the Excel study would be covered by his insurance and he scheduled and traveled in December 2013 to Texas from his home in Missouri for the first of his 4 therapy treatments. In fact, both he and Excel had contacted the insurance company prior to treatment to verify insurance coverage and his clinical trial rider.

Michael’s second Indium-111 treatment was scheduled for March 2014. One week before this treatment not only did his insurance company deny him the treatment, they said they would not pay for the previous treatment, and even denied payment for his monthly Sandostatin LAR. Michael had no other choice — he decided to appeal the insurance decision and in the interim missed two of his Sandostatin injections. The extraordinarily stressful situation caused his serotonin production to go into overdrive and his carcinoid syndrome symptoms worsened. That’s when Michael’s indomitable spirit kicked in and help came from friends, politicians, a local TV station, and the Missouri Department of Insurance. Two large, national law firms even offered to take his case pro bono.

Michael Farris Fox 4 TV Coverage

“If a clinical trials rider doesn’t cover clinical trials, then what does it cover?” Michael asked his insurance company on the telephone and in writing and was met with silence. With the help of Carol Harden of the Missouri Department of Insurance, a woman Michael describes as his “angel from heaven,” Mike’s insurance company, Golden Rule, was contacted numerous times. After the Fox 4 television station contacted the insurance company, Michael received the phone call he was hoping for – the insurance company said they would pay for the first treatment that had been denied, for the continued Sandostatin injections, and for the next 3 clinical trial treatments that Michael had anticipated when he began the trial. Click here or on the photo below to see Fox 4’s television coverage about Michael.

Michael Farris Fox 4 TV Story

Knowing he will not be cured, Michael is doing everything possible to control the progression of his disease and to keep it growing as slowly as possible. He is working as a financial planner and has embarked on a new exercise plan where he has built up to working out 5 days a week. Using the Rock 360 helps him to stay fit and mentally strong through his battle with carcinoid cancer. He has also changed his diet and eats a lot of fruits and vegetables and a lot less meat and sugar. “Cancer to me is 95% mental and 5% physical,” says Michael.  Scroll down on the Rock 360’s Facebook page to March 31 to see a video of Michael’s interview with Rock 360 inventor Tommy Saunders “to tell his story in hopes to inspire others that no matter what obstacles they might face they can have a positive attitude through their journey.”  For those not on Facebook, click here or on the picture below to see the video.

Michael Farris

Michael has now completed the PRRT treatments in Houston and is in the 4 follow-up stages with Excel. He has also switched to Somatuline Depot monthly injections and says he is feeling pretty good, “and with God’s grace and the prayers of many, living as normal a life as possible.”

“Let your faith grow,” advises Michael, “your faith in God, family, yourself. Cancer was a blessing for me. I have been blessed in ways I never even knew existed. Now it’s my turn to be a blessing back to someone else.”

If you are a carcinoid/neuroendocrine cancer patient and you have had your insurance denied, you can reach out to Michael Farris for guidance at michael.farris@lpl.com.

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9 More News Items for the Carcinoid and Neuroendocrine Cancer Community

Carcinoid/neuroendocrine cancer specialist Eric Liu, MD Joins Rocky Mountain Cancer CentersCarcinoid/neuroendocrine cancer specialist Dr. Eric Liu will be joining the Rocky Mountain Cancer Centers in Denver, Colorado, effective June 1, 2015. He and medical oncologist Dr. Allen Cohn, also from Rocky Mountain Cancer Centers, will head up a new Neuroendocrine Tumor Center in conjunction with HealthONE’s Presbyterian/St. Luke’s Medical Center. The Center is a wonderful new resource for the NET community! Read more here.

Breaking News: A novel treatment against neuroendocrine tumors will be the focus of a newly announced partnership between RadioMedix, a clinical phase biotechnology company focused on the development of radiopharmaceuticals for targeted diagnosis and therapy of cancer, and AREVA Med, the AREVA medical subsidiary developing innovative therapies to fight cancer. They will co-develop the next generation of PRRT agents using Alpha emitters. Read more here.

Over 50 abstracts on carcinoid and many more on neuroendocrine tumors have just been published online as part of the 2015 American Society of Clinical Oncology, ASCO, annual meeting to be held later this month in Chicago. The Annual Meeting brings together 30,000 oncology professionals from around the world. Educational sessions feature world-renowned faculty discussing state-of-the-art treatment modalities, new therapies, and ongoing controversies in the field. Science sessions present the latest ground-breaking research in oral and poster format. Among carcinoid/NET specialists whose research is being presented are Dr. Matthew Kulke, Dr. Diane Reidy, Dr. Jonathan Strosberg, Dr. Aaron Vinik, and Dr. James Yao. To view the online abstracts, click here. Change the search terms to see additional abstracts, i.e. neuroendocrine tumors.

ASCO 2015 Abstracts on Carcinoid and Neuroendocrine Tumors

Save the dates for upcoming conferences for neuroendocrine cancer patients, loved ones, and medical professionals. Please check our Calendar of Events as we regularly update and add events: http://www.carcinoid.org/events.

June 20, NET Cancer Patient Conference, Minneapolis, Minnesota, sponsored by Neuroendocrine Cancer Awareness Network, click here for more information and to register.

June 27, LACNETS 2015 Patient & Caregiver Education Conference, Los Angeles, California, co-sponsored by LACNETS, the Los Angeles Carcinoid Neuroendocrine Tumor Society, and the Caring for Carcinoid Foundation. Details and an agenda coming soon!

October 3,  New Jersey Carcinoid Cancer NETwork 2015 Conference, Edison, New Jersey. Details and an agenda coming soon, click here to sign up for conferences updates.

October 15-17, 8th Annual NANETS Symposium for physicians, health professionals, researchers, residents, fellows, and medical students, Austin, Texas. Click here for an agenda and more information.

The Oncolytic Virus Fund at Uppsala University in Sweden, made possible with  generous support from the late Vince Hamilton as well as donations from people worldwide, will enable clinical trials to hopefully begin in autumn 2015, but the exact timing is dependent upon the Swedish Medical Product Agency’s response to the researchers’ application. Other news from Uppsala is that the virus treatment has been named AdVince after Mr. Hamilton and the virus to be used in the clinical trials has been produced and tested. “The clinical trial will start with dose escalation to ensure that the treatment is safe. Four different dosages will be tested. Three to six patients will be tested for each dosage.” Read more here

There are 2 new support groups for carcinoid/neuroendocrine cancer patients and their loved ones: N.E.T. Hopefuls in central Florida and NEPA Zebra’s in Northeast Pennsylvania. Wanda Probst heads the Florida group and Lori DeVoe is the group leader for the Pennsylvania group. Click here for a list of support groups and contact information, the list is alphabetical by state.

NEPA Zebra's carcinoid and neuroendocrine tumor support group, Pennsylvania

Congratulations to Josh Mailman upon receiving the Service Recognition Award during the 3rd Theranostics World Congress. “As a patient and patient advocate, Josh Mailman strongly encourages patients and medical practitioners to implement and practice comprehensive integrative healthcare to improve the lives of people affected by cancer. . . .” Since his diagnosis with a pancreatic neuroendocrine tumor in 2006 Josh has focused his time and energy in the nonprofit community serving as president of the Northern California CarciNET Community, as Chair of the Patient Advocate Advisory Board for the Society of Nuclear Medicine and Molecular Imaging (SNMMI), on the Executive Board of the Society for Integrative Oncology (SIO), and as a member of the NCI task force for Neuroendocrine Tumors, among other activities.

3rd Theranostics World Congress, Josh Mailman, Award

The Clarence Light Orchestra & The Ten Mile Inn will present Country for a Cure featuring local musicians on June 13th in Galloway, Ohio. All proceeds will go the Neuroendocrine Cancer Research Fund at the Ohio State University James Cancer Hospital. The Dallas Moore Band will be the special guest performers. There will be food, raffles, and split the pot. Visit the Clarence Light Orchestra’s Facebook page for more information.

Country for a Cure, June 13, 2015

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15 Videos from the 3rd Theranostics World Congress

The 3rd Theranostics World Congress featured a patient education day on Saturday, March 14, made possible with support from the Carcinoid Cancer Foundation and the Caring for Carcinoid Foundation. The NorCal CarciNET Community provided funding to record the entire Congress and with their generous permission we share the videos from the patient education day.  The Congress was co-sponsored by the Society of Nuclear Medicine and Molecular Imaging and Johns Hopkins Medicine.  Click on the video titles or the images to watch the videos.  Some of the presentations were not recorded.  For the complete program, click here: https://vimeo.com/norcalcarcinet.

State-of-the-Art Management of NETs: Clinician and Patient Perspectives

The Clinician’s Perspective, Thomas O’Dorisio, MD

3rd Theranostics World Congress, Thomas O'Dorisio MD

The Patient’s Perspective, Josh Mailman

3rd Theranostics World Congress, The Patient's Perspective, Josh Mailman

Single-center Experience Over More Than a Decade Analyzing 1000 Neuroendocrine Neoplasm Patients Treated with Single- or Duo-Radionuclide Peptide Receptor Radionuclide Therapy, Harshad Kulkani, MD

3rd Theranostics World Congress, Harshad Kulkami, MD

68Ga-DOTA-Octreotate PET/CT and Outcomes of Peptide Receptor Radionuclide Therapy for Paediatric Patients with Refractory Metastatic Neuroblastoma, Michael Hofman, MD

3rd Theranostics World Congress, Michael Hofman MD, Neuroblastoma

Gallium Approval in the US: Background and Moving Forward

The US Experience with Imaging and Therapy, Ebrahim Delpassand, MD

3rd Theranostics World Congress, Ebrahim Delpassand, MD

The US Experience — Iowa, Yusuf Menda, MD

3rd Theranostics World Congress, Yusuf Menda MD

The US Experience — Vanderbilt, Ron Walker, MD

3rd Theranostics World Congress, Ron Walker MD

Pathway to Approval:  FDA Perspective, Dwaine Rieves, MD

3rd Theranostics World Congress, Dwaine Rieves MD

SNMMI Gallium Users Group: Moving Approval Forward in the US, Michael Graham, MD

3rd Theranostics World Congress, Michael Graham, MD

Panel Discussion:  Gallium Approval in the US, Drs. Richard Baum, Ebrahim Delpassand, Michael Graham, Yusuf Menda, Dwaine Rieves,  Ronald Walker

3rd Theranostics World Congress, Panel Discussion on Gallium Approval in the United States

How to Deliver Theranostics

PRRT and Theranostics in Children, Sue O’Dorisio, MD

 3rd Theranostics World Congress, Sue O'Dorisio, MD

PRRT + Chemotherapy = Peptide Receptor Chemoradionuclide Therapy (PRCRT), Michael Hofman, MD

3rd Theranostics World Congress, PRCRT, Michael Hofman, MD

Congress Highlights and Looking to the Future: Richard Baum, MD & Frank Roesch, MD

Closing Comments and Awards

Congratulations to Josh Mailman upon receiving the Service Recognition Award!!

3rd Theranostics World Congress, Josh Mailman, Award

Patient Session with Dr. Richard Baum, Dr. Eric Liu, Dr. Thomas O’Dorisio, and Dr. Edward Wolin, Moderated by Josh Mailman

3rd Theranostics World Congress, Patient Session with Physician Panel

Posted in carcinoid and neuroendocrine tumor conferences | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | 2 Comments