Plexiform Tumor Treatment

,I met with researcher Dr. Whalen at Children's Hospital Milwaukee. He took the time to talk to me about his research that is close to entering human trials. He has been working on Photodynamic Therapy (PDT). He described the therapy as a chemo drug with a light switch. It is tumor cell specific. A heme designed infer red sensitive chemo drug will only activate with a light source. His colleague at the University of Florida has had great success in animal models. They have implanted dermal and plexiform neurofibromas from humans and had great success with the PDT. He described it as tumors melting away. They have had great success with chemical, cell and animal trials. The pilot will focus on dermal superficial tumors and if successful will then move onto deeper plexiform neurofibromas. Systemic side effects have been minimal and the treatment is minimally invasive. This will be an exciting undertaking if this project gets funded and off the ground. As a parent of a child with Neurofibromatosis, it gives me such hope new therapies are on the horizon for a disease with no treatment. There are other new promising therapies which we will report on in June after the big Children's Tumor Foundation conference focused on research. Stay tuned.

Guest Blogger Stefanie Sacks

Stefanie Bryn Sacks, M.S.





Shop ‘Til Ya Drop, Literally: How to Navigate the Grocery Store
It is not often that I find time to read. Typically I put books, magazines and newsletters in a pile and throw a few in my bag wherever I go thinking that I may catch a moment to read while waiting for one son while at a swim lesson, while the little one naps or perhaps at a red light!

So, excuse me if you have all heard about this before me, but I recently found out that our trusty supermarkets have now decided to implement their own nutrition profiling system—in the form of shelf-tag programs—to help shoppers identify healthy foods. What a great idea! NOT!!! There are several (five so far) different profiling systems and each is using different criteria to determine how healthy a food is (there are no regulations for these systems as of yet). Like we weren’t confused enough! And according to one system, Frosted Flakes is considered a smart choice. What?!

Is this going to make shopping easier for American’s (no need to read ingredient lists or nutrition facts labels anymore) or more confusing? Because each system has different criteria, I believe it will be far more confusing for a person to navigate the grocery store. My advice: stick to the ingredient lists and nutrition facts labels.

To make myself totally clear, we are talking specifically about packaged foods from bags to cans and everything in between.

Ingredient Lists
Let’s first talk about ingredient lists. The longer the list, the more processed the food is (less whole). So go for the shorter list. And, keep in mind that the first ingredient is of the highest quantity in the food product and the last ingredient is of the least. So if sugar (or some form of like corn syrup) is number one or two, the food has tons of sugar! Make sense? When it comes down to the actual ingredients, I tell my clients to lookout for the following:

Artificial Colors
FD&C Colors (Food Drug and Cosmetic Colors) are a wide variety of artificial colors used to color food (as well as drugs and cosmetics). Colors are typically a derivative of coal tar, a thick liquid or semi-solid tar obtained from coal. Main concern about coal tar derivatives is that they cause cancer in animals as well as allergic reactions. Found primarily in processed foods (candy, confections, cereals, puddings, jelly, hot dogs, imitation foods, condiments, soft drinks, etc.).
• FD&C blue no. 1/FD&C blue no. 2
• FD&C citrus red no. 2
• FD&C green no. 3
• FD&C red no. 2 (in Canada and Europe ONLY)/FD&C red no. 3/FD&C red no. 40
• FD&C violet no. 1
• FD&C yellow no. 5/FD&C yellow no. 6

Although all colors are permanently listed for use in foods and drugs with the FDA, their safety is not fully proven (inconclusive data).

Artificial Flavors/Flavor Enhancers
There are approximately 1500 synthetic flavorings added to foods. Most often food labels say “artificial flavors” rather than listing the individual synthetic flavorings (because they are typically flavoring compounds that are proprietary “recipes”). Flavor enhancers, such as Monosodium Glutamate (MSG), common in Chinese food and many processed soups and sauces, can cause headaches, chest pain and numbness. Although MSG is on the list of additives needing further study it is still considered Generally Recognized as Safe (GRAS) by the FDA. Just as MSG is GRAS so are all of the 1500 synthetic flavorings.

Artificial (and not so artifical) Sweeteners
Artificial sweeteners refer to a group of non-nutritive, low-calorie sweeteners all with individual properties and concerns (see article in Articles of Interest on subject). Included are:
• Aspartame
• Acesulfame K
• Neotame
• Sucralose (Splenda)
• Saccharin
• Sugar alcohols (sorbitol, xylitol, mannitol…)
• Tagatose

High Fructose Corn Syrup
Also called dextrose, this sugar is a sweet syrup derived from corn and highly processed. Most commonly comes from genetically modified corn. It is cheaper than natural sugar. Contained in large amounts in processed food and thought to contribute to the obesity epidemic in our country.

Preservatives
Preservatives, unless natural (such as vinegar, citrus and salt), are synthetic chemicals used to preserve food and beverages. Generally Recognized as Safe (GRAS) by the FDA, these substances do not need pre-market approval:
• Calcium Propionate
• Disodium EDTA
• Nitrates/Nitrites
• Potassium Benzoate
• Potassium Sorbate
• Sulfur Dioxide
• Sodium Propionate

Trans-Fat
Also called hydrogenated oil, trans fat is liquid oil made partially solid by adding hydrogen gas under high pressure to liquid oils. Trans fat is cheap and increases the shelf life of food (that is why the processed food industry loves it) yet, it has been found to greatly contribute to raising the levels of fat in the blood thus raising cholesterol.

*Information taken from A Consumer’s Dictionary of Food Additives by Ruth Winter, M.S.


A pretty long list, I know. But, put your antenna up and leave it up. Soon the label looker outer in you will be second nature!


Nutrition Facts Labels
This is that chart-like thing on the back of all packaged foods. What is critically important to know is that to make any sense of the label you must first look at:

• Serving size (like how many cookies are considered ONE serving!)
• How many servings in package

If you don’t get that down first, nothing else will make any sense. So, once you know the serving size then you can better understand the calorie, fat, carbohydrate, sodium and fiber distribution. And, why is all of this important? Well, some information may be important to one person but not to another. You can visit http://www.cfsan.fda.gov/~dms/foodlab.html#twoparts
to get finer details on the nutrition facts labels.

What do I concern myself with? Mostly the ingredient list—I don’t want to put junk in my body; and from the nutrition facts label I always lookout for the salt content (I have to manage a kidney disease) and whether or not a food has trans fat (see above). Sometimes when I am feeling a little “over my normal weight” (as in trying to lose my baby weight) I keep the calories and fat in mind.

That being said, I like to think of myself as a “food product watchdog”. There are over 15,000 new food products introduced yearly. It is utterly exhausting to keep the pace as a consumer. So, keep this information in mind as you try to navigate your way through the maze we call a grocery store.

If you have specific questions, feel free to e mail me at sbs@stefaniesacks.com.

Neurofibromatosis

Neurofibromatosis I had never even heard of this word until a doctor told me I needed to have my then 4 year old see a specialist. I asked him to repeat the word a few more times. Our lives have never been the same as our Sami does indeed have Neurofibromatosis. This genetic disorder (his caused by spontaneous mutation) not only causes tumors to grow anywhere in the body including the brain and spine but also causes bone and endocrine issues, and learning disabilities. Every cell in the body has the potential to become a tumor. So, we have created this foundation to raise research dollars for a disorder with NO CURE and NO treatment. We just recently found out our Sami has six tumors growing inside him. One is fast growing and called disfiguring (doctors words)-- we are headed for surgery the end of this month. It has been a crazy time. We really thought we would raise money for research and a preventative drug would be found before he started growing tumors. THis thought in the past 5 weeks has been replaced as we now will be cutting tumors out of him and watching the others every six months via MRI. We will continue to raise research dollars and focus on wellness and prevention. Join us in our efforts and check back for our weekly guest bloggers who will blog about wellness. "I gotta feeling" is my daughters favorite song and I will leave with that --I gotta feeling together we will find a preventative drug and create wellness.