SAVE THE ZEBRAS &DR. WOLTERING'S LAB
Why choose to fund neuroendocrine (NET) and carcinoid cancer research? (Rare cancers
with about 125,000 diagnosed cases in the US);
Steve Jobs of Apple Computer died from this disease as did Dave Thomas of Wendy's Hamburgers.
There is no cure for these cancers. Frontline research is the only way to discover medical treatments and a cure.
There are only two NET medical treatments that are FDA-approved at this time, and they don't work for every case. E.g., pancreatic neuroendocrine tumors can be treated with several chemo drug combinations that don't work as well for small bowel 'carcinoid' although they are both NETs.
Many of us are finally diagnosed at Stage IV, light years from Stage I. The resulting metastases and tumor encroachment into organs and tissue, even when treated, will likely be replaced by others in a continuous growth circle. With greater awareness, due diligence, the willingness of medical professionals and patients to communicate and share knowledge of the disease process, coupled with new diagnostic tools and protocols, we can shorten the diagnostic process which now averages seven years or less. Over 90% of patients are initially incorrectly diagnosed. Correlating with these incorrect diagnoses are improper treatments. And, some of us (mostly women) are told it's all in our heads. What's worse, some doctors consider that NETs are not cancer; others will say you're cured after surgery. Education and communication can set the record straight.
The cost to our health care system is enormous; since it takes a number of years of trial and error, scans and bloodwork, incorrect treatments, doctors visits, and even surgery this can be at the expense of other patients. It's kind of like being in the line at the supermarket and someone has 50 items in a speed line. This is at the expense of the others waiting behind.
To keep the proverbial lights on. Without electric, the cryogenically frozen tumor samples (from life-savng operations by Dr. Woltering's surgical team) will die. We can't replace them in the same form since they were the original tumors.
These tissue samples which are donated to other NET researchers who will be unable to finish their research.
Black Raspberry Powder (BRP) research will come to a halt. And it is a very promising treatment.
What about the patients already taking it?
Technicians will be out of work.
It is obvious by the fact that others are researching BRP, e.g., as a medical therapy for prostate cancer, oral cancer and colon cancer, that it looks promising as a ground-breaking, anti-angiogenic cancer therapy. Ohio State University Medical Center is conducting an on-going clinical trial on the efficacy of BRP for oral cancer (43,000 diagnoses per year). Dr. Woltering is a pioneer in this field for NET cancer. Who wouldn't want to support this effort?
Funding for NET research is extremely difficult to obtain from traditional sources such as the National Cancer Institute and the American Cancer Society, since funding research for more common diseases will help many more people. Woltering's research team has also discovered groundbreaking medical advances that benefit NET patients. The NET research team will be unable to continue its activities without a major financial boost in the next six months.
If every NET patient who has sought Dr. Woltering's "medical counsel", or dialed his cell phone while holding a crumpled scan report,would contribute $15, the webmaster could take down this web page. The webmaster's (aka Suzi Garber) life was saved by the NOLA (New Orleans LA) team in 2007 so she is a "stakeholder". She was turned down for surgery by five doctors before finding the NOLA NETs.
If you'd like more detailed information, read the five paragraphs below. The information is somewhat scientific but easily understood.
PATIENTS ARE KNOWN AS ZEBRAS: The medical community uses the term “zebra” as a reference to a rare disease. Physicians learn that a core concept for diagnosis is that the simplest explanation is usually the best solution, ergo, it is generally more productive to look for common, rather than exotic causes for medical problems. Hence the phrase, "If you hear hoof beats, think horses, not zebras.” Cancer patients with neuroendocrine tumors (NETs) are, in fact, the zebras.
WHAT IS NET CANCER?: NETs are often called “cancer in slow-motion” although this is not true in all cases. They can occur anywhere, but the majority of primary tumors tend to be in the lungs or gastrointestinal tract. The survival figures are dismal; it can take 5-7 years to make the correct diagnosis and over 90% of all NETs are incorrectly diagnosed and treated for the wrong disease such as irritable bowel syndrome, asthma, Crohn’s disease, rosacea and menopause. As noted above, Steve Jobs died from pancreatic neuroendocrine cancer (pNETs), not pancreatic cancer. These tumors encroach on body organs and tissue through their eventual growth, and, if functional, they produce hormones which can wreak havoc with the body’s systems.This cancer is in the shadows of awareness. Its voice is small, its visage, unseen. Research dollars are difficult to come by for rare cancers since the patient population is small and the financial return doesn’t cover the costs of R & D.This makes it virtually impossible to mount a substantial research project for NETs to discover a cure or new treatment.
DR. WOLTERING: Of the over 150 clinical papers which are a direct result of his research, a number of them are considered to be seminal works in the field. Practicing in the NET community for the past thirty years, Dr. Woltering is now the James D. Rives Professor of Surgery and Neuroscience at LSU’s School of Medicine. Adding to his long list of accomplishments, he established one of the largest NETs-only specialty clinics in the U.S., is an elite researcher and holder of 15 patents, and is an undying advocate for his patients. Dr. Woltering and his team have led the way to the acceptance of surgery led the way to the acceptance of surgery as the first intervention to consider in the treatment of NETs. Until that point, the diagnosis of NET cancer carried an ominous tag line, “wait and see” . Reflecting Dr. Woltering’s diagnostic and medical approach to NET cancer, we now “educate, ruminate, and act”.
DR. WOLTERING'S LAB: The incidence of NETs has tripled over the last decade so we're in high gear to find treatments that work reasonably quickly and also stem the tide of metastases. Researching NETs over time has led to the development of ‘receptor-targeted therapies’ like Peptide Receptor Radionuclide Therapy (PRRT), now in clinical trials, which might prove to be applicable to other cancers. NETs and many breast cancers have sst2 receptors as do childhood neuroblastomas. We can’t afford to lose this momentum, let alone Dr. Woltering’s Lab which is an important cog in the NET wheel. Many of the therapies and discoveries, such as those above, arise from research and Dr. W.’s NET research lab is in imminent danger of closing down due to lack of funding. The lab maintains over 740 tissue samples from patients whose lives were saved by his surgical team. These samples are cryogenically frozen. If the lab closes, they will be destroyed and lost forever. The lab does not charge for its tumor-testing services which would be about $2000 per patient in the open market. (These tissue samples are also available to other researchers free of charge). Tumor tissue is used to test which therapies would be most beneficial for each patient which helps dictate a course of treatment.
BLACK RASPBERRY POWDER: Dr. Woltering and LSUHSC (Louisiana State Health Sciences Center) mutually hold the patent on the use of black raspberry powder (BRP) as an anti-angiogenic agent. BRP is an anti-cancer strategy that prevents new blood vessels from growing and providing nutrients to tumors. Most of today’s newest cancer drugs target rapidly dividing cells (which is why you lose your hair during chemotherapy); agents like BRP target only the cancer cells. Dr. W’s original research paper on BRP was one of the first pubished. The results are very, very promising but we need to keep up the momentum! Other researchers are now examining BRP as a possible anti-angiogenic agent for oral cancer, prostate and colon cancer. It's quite possible that Dr. Woltering's on to something big!
Making a gift online is a quick, easy, and secure method of supporting the LSU Health Sciences Center Foundation. You can make your gift online by using your Visa, American Express, Discover or Mater Card. Please be sure to select the intended "designation" (a drop down menu) NET CARCINOID CANCER FUND when you make your contribution. Here's the link.
Give By Phone
To make your gift by phone, please contact the LSU Health Sciences Center Foundation at 504.568.3712.
Give By Mail or Fax
Make your check payable to the “LSU Health Sciences Center Foundation” and mail it to the address below. Please notate the cause "NET Carcinoid Cancer"
The Foundation for the LSU Health Sciences Center
NET Carcinoid Cancer Fund
2000 Tulane Avenue, 4th Floor
New Orleans, LA 70112
Phone | 504.568.3712
Fax | 504.568.3460
We have a goal of $50,000.