Lucy is taking some time off to do some other things. Please check lucysnoidblog again May 15, 2012. You can email lucywiley@verizon.net

Pterostilbene

Pterostilbene - Reveratrol's lesser known (but not less powerful) cousin

This headline in a full-page newspaper advertisement got my attention. Like most newly marketed supplements, the promises are spectacular: switches off cancer-causing genes and turns on the cancer-fighting genes; kicks the crap out of free radicals and quells inflammation; lowers bad cholesterol and blood sugar - with absolutely no unwanted side-effects.

Is this the miracle we've been looking for or just the "supplement du jour," destined to be de-bunked and replaced by something else from the vast inventory of scientifically enticing supplements?

Ptero as in pterodactyl

Pterostilbene (Tero-STILL-bean) research at the University of Mississippi showed so much promise, a manufacturer hammered out a patent agreement with Ole Miss and started making pTero-Pure, in capsule form. You can order a 30-day supply on the Internet for $20 to $35. That's if you want to take one capsule a day. Some test subjects got about double that dose.

Is resveratrol so yesterday?

The apparently outdated resveratrol has been around at least five years. Both pterostilbene and resveratrol are found in the skins of blueberries, grapes, a weed from China and an endangered tree in India. But both supplements apparently can also be created by yeast fermentation (don't ask me how) in a lab and that's where "made in the USA" pterostilbene is coming from, claims the manufacturer.

According to the news story in my local paper, pterostilbene works somewhat like resveratrol but stays in the body longer. There are some compounds available with both supplements in them.

Am I like a rat?

Let me just point out a couple of things before you whip out that credit card. I found with a quick search, only one study actually used human beings, and although the stats look good - who knows whether the stuff will actually turn out to work once it gets into a wider segment of society - namely carcinoidland?

The other studies to-date on pterostilbene include one from China, using rat mammary glands. They did find pterostilbene reverses the effects of malignancy in two cell lines of rat breast cancer.

What are we to make of all this? 

The stuff is cheap enough, it seems. But does it work? In the lab, tissue is isolated. The specimen lives stress-free. It doesn't breathe exhaust fumes or contend with other diseases determined to ravage the same body - yours.

Humans have a lot in common with rats. That's why the hapless little rodents are used in research for drugs, cosmetics and all kinds of other stuff aimed at filching some greenbacks from your wallet.

But do we have enough in common with rats to rejoice over pterostilbene? Time will tell. You can read for yourself about the two (that's right just two that I could find) official studies with pterostilbene.

http://www.ars.usda.gov/is/AR/archive/nov06/health1106.htm?pf=1

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3276376/

If you do decide to conduct your very own drug trial, let me know how it works out. I have never met anyone diagnosed with neuroendocrine cancer who says, "I took (pick one: Essiac Tea, Co-Q10, calcium, grape seed oil, resveratrol or pterostilbene) and I no longer have any signs of the disease.

Maybe they're out there and we just haven't met. I'm just saying .... more study is needed.

Hernia Happens
Written Monday, March 19, 2012

FEELIN' GOOD! My hernia repair on Feb. 28 was successful. I feel no pain, no heartburn, no pinching feeling after a meal. Dr. Liu and his team did a great job on the operation. But nothing could have prepared me for the pain.

Pre-op at Vanderbilt

When your gut's been sliced open like a watermelon on 4th of July - you can expect the outward pressure of your innards to force open the abdominal muscles, especially along the incision. Imagine a can of biscuits from the refrigerator. Peel away the outer covering and leave those biscuits out on the table at room temperature a while. In an hour or so, POP! The dough will split the cardboard seam. designed to allow access to the contents of the can. Biscuit dough will ooze forth.

Now, envision your abdomen AS a can of biscuits and your seam pops open. Your guts don't flop onto the kitchen floor because you have some fairly elastic skin, backed by a layer (or two) of plain old fat to keep everything stretchy. And aren't you glad?

Little Neck vs Big Neck
The biggest danger with hernia is that food in the intestine or stomach will become trapped, protruding through a small hole between the abdominal muscles. That's a serious development that can lead to gangrene. Hernia holes that are small are called "small-necked" and can be very dangerous so they usually merit immediate repair.

If there are one or more larger holes, from which the bowel protrudes, those hernias are called "large necked" and they are not as serious -- usually. But over time, your abdomen changes. Things begin to shift and muscles get weaker. So, large-necked hernias can wait a while but not too long.

Hernia can be painful
Aside from the fact you look pregnant (man or woman) the diaphragm can get pinched or rolled into some uncomfortable positions. It can cramp like hell and make you want to holler. You can hear food moving through your gut -- which amuses youngsters but can be embarrassing during quiet moments at a concert or speech.

The Operation
I went to Vanderbilt University in Nashville, TN for a hernia repair. Why so far from home?

Cynthia Wheeler, RN,
Dr. Eric Liu, MD,
Vanderbilt NETs clinic

(1.) My previous experience (March 2011) getting the 68-Gallium PET/CT at Vanderbilt was more than satisfactory. I was impressed with the way I was treated. Dr. Ron Walker, of the Vanderbilt Nuclear Med. Dept. and Dr. Eric Liu, head of the NETs clinic explained the results of my scan and discussed my treatment plan with clarity and respect.

(2.) Following past surgical procedures with general anesthesia, I've felt as though I couldn't breathe. It's a frightening sensation like my lungs are filling with fluid. It happened after de-bulking surgery ('07) in Kenner, Louisiana and again after NanoKnife ablation ('11) in Alexandria, VA. I thought it best to be in the care of an experienced NETs surgeon for the hernia repair, in case the shortness of breath (SOB) happened again. And, it did.

(3.) I consulted with two surgeons close to my home near Austin, TX. One said he would remove any tumors that were "easily gettable" but was not likely to make a thorough exploratory of my abdomen to look for metastasis during a routine hernia repair. The second surgeon made it clear he was not a specialist. 'Nuff said. I decided to go with Dr. Liu at Vanderbilt because I know he is a surgeon and would be more likely to hunt and destroy alien growth in my insides.

(4.) Turned out I did have a small tumor in my liver. An MRI in January showed nothing. But my pre-op MRI at Vanderbilt showed this new tumor, and I was glad I had a skilled NETs surgeon to cut it out.

Dr. Liu says, "These hernia surgeries hurt like the dickens." I recall this as the understatement of all time. Back in our hotel room, I was glad again that my husband is both tall and strong. To get me in or out of the bed, he had to wrap my back -- from shoulders to knees  -- in a sheet and draw me to my feet. He helped me move backward into the bed the same way. Using your abdominal muscles after hernia repair is way worse than being waterboarded.

Thanks to my son, an R.N. in Tampa, for this tip. After two days, the pain was controlled enough to fly home. I'm back to almost normal but still taking it easy.

Spring swept onto the Vanderbilt campus while I was here. Nice touch.

Spring Comes to Vanderbilt 

Drug shortage

Where's My Octreotide Acetate?

If you use the self-injected form of Octreotide, expect to hear "Sorry, we're out," from your local pharmacy or supplier. Two plants manufacturing the drug shut down in the past three months. Two other suppliers,Teva, and Sandoz both say they are having "delays" in obtaining the raw materials or manufacturing.

A few days ago, Ben Venue pharmaceuticals voluntarily closed Bedford Labs in Ohio. That's where a number of cancer drugs including Octreotide and Doxil, are made. The resulting shortage of Doxil has created an international crisis for patients - especially kids - with leukemia.

All work at Bedford stopped when metal fragments and other foreign objects were found in packaged drug containers. From news releases, it appears Octreotide is NOT among the contaminated drugs. No recall notices have been issued for Octreotide acetate.

Sandostatin LAR - the shot that you must get in your bottom, is not affected by the shortage or plant closures at this time.

Bedford's shut-down follows a similar crisis Dec. 18, 2011, at a Novartis plant in Lincoln, Nebraska. This particular plant produces over the counter and prescription drugs, including generic Octreotide and pain-killers. Some containers held chipped and cracked pills. In some cases, a drug container held one or more completely different pills. Several recalls were issued for drugs made at the Lincoln plant.

Novartis expects to spend $120 million to update the plant and address the problem of quality control. That probably means more robots and fewer humans on the production line. But what else is behind this shortage?

Two plants closing will undoubtedly make less Octreotide available in the short term. But why is there no shortage of LAR? If you go to alibaba.com, loads of powdered Octreotide is for sale  - all of it produced in three Chinese plants.

Mistrust in China
China has it's share of problems with quality control and contamination. The world will not forget boneheads who put the chemical melamine in milk and poisoned several Chinese children. When I was in China, I heard U.S. drugs sell at premium prices there. The Chinese don't trust their own drug manufacturers. Can we trust our pharmaceutical companies? What choice do we have?

According to a pharmaceutical supply site, Octreotide in 50 mcg/mL, and 500 mcg/mL in 1 mL vials can still be found but all other dosages are wait-listed.

I found the following statement about Octreotide under the heading "Carcinoid Tumors," from Bedford Labs at www.drugdepot.com:

"Improvement in clinical signs and symptoms or reduction in tumor size or rate of growth were not shown in clinical trials performed with Sandostatin these trials were not optimally designed to detect such effects." So what were the trials designed to detect? I know the drug was developed to treat acromeagaly but it's been used for NETs more than a decade.

Maybe we should order the powder from alibaba.com and start making our own Octreotide. I doubt we could do any worse.

Which Way To Go?

In carcinoidland, we stand at the crossroads, wondering which way to go when it comes to our treatment options. Sometimes there are several options to be considered at once. Rarely are we presented with a clear-cut direction which every specialist agrees on.

For example, if there is considerable metastasis and some of it is not near the primary tumor (distant metastasis) we may wonder if it is worthwhile to try getting all the tumor tissue in one operation or treatment. Some of us are so grossed out at the thought there is something "growing inside" us, we want it cut out, burned out - ripped out as soon as possible.

On the other hand, it's not unusual for patients, especially those whose cancer has spread to several organs, to chose no further treatment. Many of them live fairly comfortable lives for months or years.

Smaller, less aggressive forms of neuroendocrine tumors are easier to decide, in most cases. Surgery is usually the "first line" treatment. After that, NETs  treatment options become a tangle of professional opinions, available treatments and the patient's natural fears, along with monetary concerns. It would be so great if we could turn to a trustworthy person to manage our cases and be treated effectively, secure in the knowledge we are receiving the best available care.

That's rarely the case for NETs patients.

Why is Carcinoid so Complex?

• Each case is unique, depending on a bewildering array of factors such as the location of the primary tumor, the extent and location of metastasis, whether the disease is aggressive or indolent, the age and condition of the patient, and the expertise of the diagnosing physician.
• Some effective treatment options are not offered to many NETs patients for an unfortunate and unfair combination of reasons.
• Not all doctors are qualified to diagnose, let alone treat NETs. Even specialists are not of one mind when it comes to treating some forms of NETs. 
• There are numerous approaches to successful treatment. For example, liver metastases may be surgically removed, heated, frozen, shot with alcohol, electrocuted with NanoKnife, irradiated by a variety of means and treated with a number of chemotherapy agents.
• What works for one may not work for another. Even if you have nearly identical women of the same age and physical characteristics, with the same type and size of tumors in the same location, one may benefit from a treatment that either doesn't work for the other, or may actually do her some harm.

How do We Find Our Way?
We usually cruise along for a while after the first intervention, which is almost always a surgical procedure - be it full abdominal exploratory or "key hole" surgery. But at some point, we begin asking, "What's next?"

Things get desperate when we have recurrence - which is almost certain to happen at some point. Most of us return to the doctor who performed or oversaw our first treatment. We usually learn that a second surgical procedure is not indicated because, although we may have new tumors, they are not large enough or in numbers suitable for the risk of a second surgery. We may be referred to another specialist who offers chemotherapy or radiation of some sort.

Here's Where Things Get Complex
One of the most effective treatment options for NETs with "uptake" (tumors absorb octreotide) is Peptide Receptor Radionuclide Therapy. In the US, this is likely to be I-MIBG, which is not used in Europe anymore because they have more effective isotopes - Lutetium and Yttrium. One place, Excel Diagnostics in Houston, provides PRRT with Lutetium. Otherwise, you must travel to Europe, Israel or another country for PRRT.

In many cases, patients are not even told about this treatment. The most they are likely to hear about is MIBG. The cost of PRRT varies from about $3,000 to more than $60,000 - and is unlikely to be covered by health insurance without a fight. Still, the option should be accurately described for every NETs patient, in my opinion.

Because of the unreal costs of health care in the US, more and more treatment options are becoming out of reach for NETs patients. Does that mean we should not be informed?

The Next Step
If we are turned down for a second surgery - or if we just don't want to go that route - we usually see a second specialist who may or may not agree with our first doctor. Some docs move immediately to chemotherapy, especially one of the two newly approved drugs, Afinitor and Sutent. Others prefer radioactive spheres or want to block the blood supply to the tumor by a process called embolization.

A Way to Think Things Through
Handle fear first. I think you have to take fear by the horns and see if there's any substance behind it. Do you fear having your body irradiated? Have you seen loved ones subjected to rounds of chemotherapy, only to die in misery? Do you fear surgery?

If so, you must research on your own. Learn as much as you can about your individual situation so when you speak with a specialist, you will understand the lingo and can ask empowering questions. Knowledge trumps fear. Don't let fear make your decisions. You're smart enough to do this for yourself.

Seek at least two specialists for their opinions. Research the background of each specialist and chose two who have different backgrounds. If they both suggest the same approach, I'd say that's pretty convincing. Tell them your fears and find out if your fears are grounded in fact. Don't let physicians soft-pedal your challenges. Know what to expect and how they plan to offset nausea, pain, skin conditions, etc.

Perhaps, our loved ones who died while receiving chemotherapy had advanced disease and were trying a last-ditch effort to cure or at least slow progression. That may not be your situation at all. You may be in better shape going into the therapy and have a much better chance at buying some significant, good-quality time. You may benefit from a single treatment or a series of them.

A drug that makes someone else sick may not affect you the same way. Or - you may be sick for a while but benefit for a long time after the treatment. You may be in for a rough time so know the odds of the drug's effectiveness in your particular case. Then decide if it's for you. Base decisions on facts.

Remember - there's no one-size-fits-all treatment for NETs.

Conflicting Opinions
There's no such thing as too much information when it comes to cancer.
What happens when specialists don't agree? This may sound odd and it may not be your choice but I would seek a THIRD opinion. In choosing this specialist, you are looking for something different. You want the doc or the team with experience in a VARIETY of treatments and at least one doctor you can TRUST.

What do I mean by trust? I'm talking about feeling that - here's a doctor who truly cares what happens to you, who will seek the opinion of other specialists, if necessary. If he or she says, "I don't know but I will find out," that's a plus. If you are invited to meet with the treatment team, that's really a plus. You may be assessed by a single doc but if you have to meet the team one at a time, that takes a lot out of you and it is not nearly as productive as all of them hearing about your case at one time.

Beware the doc who claims to know it all. NOBODY knows it all.

Read Lance Armstrong's first book.
He talks about seeking a second opinion when he first went for treatment. Remember: he had mets throughout his body, including his brain. He was used to teamwork and he wanted a group with "can do" attitude - not arrogant or condescending attitude. He wanted to get well. He wanted to win.


Sometimes It's Best to Take LIttle Bites




If you're unsure about chemotherapy - you might want to try it and reassess after some point to see if it's been effective. You may not want to continue or you may consider the side-effects tolerable. Determine ahead of time how you will check for results - what type of scan is best? Or will lab tests tell you what you need to know?

If you are fearful about radiation or new techniques like NanoKnife, gather as much information as possible and question both other patients and your specialist. A doctor who doesn't want to answer your questions is probably not going to inspire your trust. You do NOT have to stick with a doctor who doesn't respect you as a fellow human being.

Sites to review on making treatment decisions. Some of them are a bit outdated because they don't mention all treatment options but they have some good information on which to base decisions:

http://www.cancer.net/patient/Cancer+Types/Carcinoid+Tumor?sectionTitle=Treatment

http://www.neuroendocrinetumor.com/health-care-professional/net-treatment-options.jsp

http://www.caringforcarcinoid.org/neuroendocrine-cancer/pancreatic-neuroendocrine-cancer/treatment-and-drugs

Black raspberry extract

EXTRACT! Black Raspberry goes portable

A few days ago, I received a promotional 2-ounce bottle of Berri-Health's new product, black raspberry extract. It comes with a screw-on cap containing an eye-dropper and the following information:

Ingredients: Black raspberry extract (10% ethanol.) Suggested use: Take one full teaspoon with water. Storage: Store in a cool, dry place. Keep in refirgerator after opening. Keep out of reach of children. Contains alcohol. Fresh berry anthocyanin ratio: 4.8:1 Equivalent to approximately 400 black raspberries. www.berrihealth.com 888-761-8407 service@berrihealth.com 1325 NW Heather Dr., Corvallis, OR 97330 experaration Date: 6/21/2012

In a letter with the bottle, Steve Dunfield, president of BerriProducts, requested feedback on the new product, which sells for $34 plus shipping. The bottle is a convenient way to ingest BRP without the mess of mixing the freeze-dried powder.

It will be easier for travel, no doubt about that. 

But the dose may be a bit different. I tried the one teaspoon as suggested. It takes about three droppers full to equal one teaspoon. I mixed it with filtered water. The taste is not very different from the powder but you can taste and smell the alcohol, which could be a turn-off for nauseated noids.

At the one-teaspoon dose, the extract was not enough to stop or even diminish diarrhea in my case. One teaspoon may be sufficient for people who do not have NETs or some other ailment but if you want to stop diarrhea, that troublesome side-effect of carcinoid and the short-gut syndrome post resection, you'll need way more than a teaspoon, I think.

More than a teaspoon but how much is enough?

I decided on a somewhat scientific approach to determine my personal dose. I waited 24 hours to see if the one-teaspoon worked. As I said, it didn't stop the diarrhea, so I decided to try more of the extract.

I divided the remainder of bottle in half and drank half of that mixed with filtered water (so one-quarter of a bottle, which would be about one-half ounce.) THAT seems to be working. I may require less of the extract in time. My experience with medications - herbal or chemical - is that I must find my personal level and sometimes it's not what other people find effective. In most cases, I need far less of whatever is prescribed. I have to cut up pills, divide the powder in a capsule or dilute some liquids to a degree others may find ineffective -  but it works for me.

Finding the right dose

When I experimented to find my personal dose of the freeze-dried BRP, I learned that I did best on 20 to 40 grams per day. If I used the suggested 1 gram per kilogram of weight, I would be using more than 50 grams a day. I don't believe it harms you to use more than you need but considering the cost, I wanted to find the optimal dose - which I base on symptom (diarrhea) control since I have no way of knowing whether I am reaping any other benefits from black raspberries. 

I use 40 grams most of the time. But when I stopped using octreotide (trip to China) I required far less. During the time I was off the octreotide, 20 grams was plenty. More than that and I became constipated - which almost never happens otherwise.

In reading about the amount of BRP used by researchers, I saw that most human doses did not exceed 40  grams per day. 

The new extract will appeal to some users because it can be easily transported and mixed with tea, or even a carbonated beverage. But it's more expensive than the powder if you adhere to the 1g per kg of body weight. Convenience vs cost - always a trade-off.

Does it work?

I had to answer that for myself and I'm still not 100% sure, although there appears to be a remarkable benefit from using black raspberries in concentrated form. Just controlling the diarrhea would be enough for me but my most recent MRI (January 2012) showed no new tumors and stable disease all around. We noids know that not all tumors show on scans or else not all tumors can be seen by radiologists on the scans we have available in this country. I'm heading to Vanderbilt for another check-up and hernia repair.

Dr. Liu will use a laparoscope to see whether there's anything else developing in my innards, so stay tuned. Meanwhile, there's a wealth of information on black raspberries and may other kinds of berries containing the substance that gives them their red, blue or black color - anthocyanin.

More than 600 different bioactive constituents can be found in berries and green tea. Scientific research shows them effective in preventing the development or spread of cancer, lowering Ki-67 and COX-2 expression. 

Clear, conclusive evidence shows berries can prevent tumor proliferation in the bladder, breast, colon, esophagus, oral cavity and skin. For lung and prostate, more study is needed. (See link on Berryhealth symposium below.)

Among the other disorders they inhibit or improve: multiple sclerosis, liver cancer and liver diseases from alcoholism, virus or environmental toxins. Berries enhance the benefits of regular exercise and reduce the inflammation of chronic colitis. Brain aging and cardiovascular disorders such as hypertension also may be slowed or halted by ingesting anthocyanins. 

But they use rats!

Nearly all the research on BRP has been done with rat models. Rats and mice are considered "relevant" research animals because they are enough like us for comparison. You can do a lot of things with rats that would be impossible or unethical to do with people. You may have more in common with rodents than you think.

You can infect them with diseases, implant tumors in their bodies, and kill them when you need to study them in more detail. Dr. Gary Stoner, professor at the Medical College of Wisconsin, has conducted studies with rats and humans in conjunction with his research on raspberries and similar substances.

In the early 1980s, at Ohio State University's College of Medicine, Dr. Stoner’s laboratory developed a “food-based” approach to the prevention of esophagus and colon cancers in rodents and in humans using freeze-dried black raspberries. His research is documented in more than 350 peer-reviewed publications and book chapters, and he has edited several books.

Stoner now serves as director of the Molecular Carcinogenesis and Chemoprevention Program in the newly developing Cancer Center at MCW.

This will blow your mind

If you want to see how many researchers are looking at the health benefits of berries search on

http://www.berryhealth.org/Information/2011_preproceedings_sm.pdf 

You'll find the full publications in many cases, not just abstracts or media releases about the symposium's highlights.

What about NETs?

Perhaps anything that inhibits malignancy in such varied tissues as breast. liver and bladder, is likely to affect neuroendocrine tumors. But I have not found any current citations directly linking NETs and BRP. If you find something, send it my way.

Dr. Woltering and associates in 2005
This publication is highly technical but the bottom line is: BRP contains gallic acid among other ingredients, which slowed or stopped the growth of tumor-generated blood vessels (angiogenesis.)

http://www.ochsner.org/content/misc_files/black_raspberry_paper.pdf

This was research in a lab, with loads of controls. What happens in a lab cannot always be recreated in the body. It is interesting to see how Woltering's associates made their own BRP for this study.

I've blogged at length (maybe too much length) about my own experiences with BRP and there's my YouTube "tutorial" on mixing BRP. But berries may not be the whole package when it comes to preventing or treating cancer. Some researchers believe it is a big part of the natural cure we've sought for so long. But there appears to be some other property required before BRP can be used reliably for cancer prevention or control, Dr. Stoner says. The missing miracle catalyst may be another natural substance but it could be something far different.

Unfortunately, NETs is a rare disease and berries are not very attractive to a research climate funded by pharmaceuticals seeking iron-clad patents and big profits.