A few weeks ago, I attended the Carcinoid Cancer Foundation's Symposium on Neuroendocrine Tumor Management at Mount Sinai Hospital. It was excellent; in particular, I was extremely impressed with Dr. Eugene Woltering from the New Orleans Neuroendocrine Tumor Specialists (NOLA NETS).
Dr. Woltering presented a radically different view and approach to carcinoid cancer treatment. Firstly, he considers carcinoid - whether a patient presents syndrome symptoms or not - to be a chronic disease because of its long term devastating effects on the body. He used the "hypothetical case" of a patient with a midgut carcinoid tumor (without noid or liver metastasization) to lay out what he considered to be the "standard of care" for carcinoid treatment following removal of the primary site tumor:
1. MRI and ecocardiogram every 6 months for the first three years following surgery;
2. Sandostatin monthly injections for a minimum of one year following surgery;
3. Octreoscan within the first year following surgery;
4. long term daily dose: 40 grams of black raspberry powder. (45 grams of freeze-dried powder is equal to 1 pound of fresh berries)
He also presented specialized target chemotherapy for recurrences... which he set at a much, much higher rate than Sloan Kettering does.
In short, he presented a more aggressive approach following surgery. Personally, I trust Dr. Nash, and prefer the "let's wait and see" approach rather than sandostatin injections and more screenings. I will, however, add the black raspberry powder to my diet.
The medical research (funded by the American Cancer Institute) Dr. Woltering presented on the benefits of black raspberries was overwhelming. The reason why it's such a "natural wonder drug" is that the antioxidant level in black raspberry powder exceeds all berry types - with anthocyanin (antioxidant) equaling 5 to 7 percent dry weight. Also, it is a COX2 inhibitor - reducing inflammation as well as slowing the growth of pre-malignant and malignant tumors.
The only problem is the cost (about 7$ a day). I have heard that some insurance companies will cover it with a prescription... I guess that's something worth investigating with my own insurance carrier (United Health Care). I'm not holding my breath.
Resources on Black Raspberry
Research about Black Raspberries and Cancer:
Science Daily Article: Black Raspberries Slow Cancer by Altering Hundreds of Genes
Ohio State Research: Black Raspberries Show Multiple Defenses in Thwarting Cancer
MSNBC: Black Raspberries Prevent Colorectal Cancer in Mice
Cancer Prevention Research: Black Raspberries Inhibit Intestinal Tumorigenesis Apc1638+ / - and MUC2-/- Mouse Models of Colorectal Cancer
Purchasing Black Raspberry Powder:
Note: you need to purchase 100% black raspberry powder - do not get tricked by products that advertise "black powder" made with blue raspberries! Also black raspberries are not the same fruit as the "blackberries" you buy in the store.
NutriFruit - $24.95 for 142 grams (most expensive)
Stokes Berry Farm - not accepting internet orders
Sturms Berry Farm - $79.20 for 5lbs of frozen berries (not powder)
BerriHealth - $340.50 for 3000 gram bulk powder
Acai Berry Pure Bulk - $325 for 5 lb bag (approximately 2267 grams)
Hi Marlena! How are you? Was just checking in...I lost your email address (hard drive failure). Could you email me again? luxor@uneedspeed.net Have you tried this black raspberry regiment? I'm sitting here thinking about ordering the 6000g in bulk but man oh man is that a lot of money. On the other hand, I'm pretty sure we waste more money than that on less important things, so it's all perspective I suppose. Hope you are doing well. :)
ReplyDeleteHi Lisa! I was going to start it but just got an appointment at Dana-Farber Cancer institute so I was going to wait to see what their take was (since it's going to be credit card debt if I go on it...) I'll email you and let you know what Farber says :)
ReplyDeleteHi Marlena,
ReplyDeleteany updates from what Dana-Farber said about the regimen? 1/5/2011 ileum resection here debating starting the regimen myself.
All the best to you!
Al
Hi Al -- Dana Farber doc doesn't buy into it ... Will ask Dr Reidy at Sloan today
ReplyDeleteHi Al - Doctors don't seem to want to weigh in on the BRP treatment... have you seen Lucysnoidblog? She has a very detailed account of her own experience with BRP - with excellent results. http://lucysnoidblog.blogspot.com/
ReplyDeleteThanks for mentioning my blog. I continue to experiment with BRP and have excellent results so far. I recently received a complimentary bottle of the BRP extract marketed by Berri-Health. It's more expensive and contains a bit of alcohol but it would be easier for travel. I'm trying to figure out the right dose. I believe you can go with a lower dose than with the freeze-dried mix but I may be wrong. I remain convinced of BRP's power - regardless of the form. I no longer have diarrhea and I feel great. Last MRI in Jan. showed no new mets and stable disease. Getting another MRI in Vanderbilt this month. Thanks for putting this blog together.
ReplyDeleteLucy Wiley
lucysnoidblog.blogspot.com
How mnay tablespoons is 40 grams?
ReplyDeleteFor some reason, my site got messed up on this page. It's lucysnoidblog.blogspot.com. You'll see a search box with a little red B on it in the upper left corner of the first screen. Enter BRP or black raspberry and you will see all the entries. The only reason to not do BRP is expense. I would not order the biggest amount until you see how it will do for you. Also, you can expect some diarrhea the first day but that usually goes away. And when you start having that normal bath room experience - credit card or not - priceless!
ReplyDeleteJust one more thing. You can measure out the BRP with a spoon but it is far more accurate to weigh it on a gram scale, which you can buy fairly cheaply at Wal-Mart or other discount store. Teaspoons and cups etc. are designed to weigh out liquids. Grams are for weighing out volume. In humid weather, a teaspoon of BRP may way more than the same amount on a gram scale.
Good blog, btw, Hurray for Jackie-O.
Thanks so much Lucy. You're blog is so informative!!!
ReplyDeleteIf you would like to see Dr. Eugene Woltering's presentation for the May 2011 Carcinoid Cancer Foundation, click here; http://www.youtube.com/watch?v=HsYjAZDR9XM&list=UUX9ELYTx5LTkE2ZYABEX7sw&index=4&feature=plcp
ReplyDeleteThanks Grace! That was a great presentation. The CCF is an amazing resources and source of support.
ReplyDeleteHey 'Noids - I'm going to India! Taking the bottled BRP tincture with me. India could be the ultimate test for the benefits of BRP. I don't think I'm wrong in saying 99% of the doctors you ask in the US know absolutely nothing - nada - zip - zero about any treatment that hasn't been taught for years in US med schools. They usually know nothing about nutrition and you're really lucky if they ever heard about neuroendocrine cancer or carcinoid. Waiting to see what an entrenched medical organization, receiving significant assistance from Big Pharma, has to say about a non-drug remedy is like waiting to win the lottery.Just my opinion.
ReplyDelete