Neuroendocrine Cancer

I have neuroendocrine pancreatic cancer surgically removed in 1998, but found out it had metastasized to the liver in 2002 and is inoeperable. I started receiving a monthly injection of Sandostatin and am still feeling wonderful, and my cancer has not grown since February.

I too, had a neuroendicrine tumor in my pancreas that was removed in 2002. It spread to my liver and I had many treatments done over the past 3 years to get rid of recurring liver tumors. (embolization, RFA) I eventually got approved for a liver transplant in December and had surgery in March. I had started taking a nutritional supplement called Ambrotose (a glyconutrient)last fall. When they biopsied my liver after the transplant, they said the tumors had actually developed a hard shell around them and were dying off. That's what I was told the Ambrotose would do. I still take it. Our bodies will always have the potential to make more cancerous cells, but I believe this supplement will prevent more from growing anywhere else. You might want to check into it if you're concerned about it spreading. It is also very effective for people taking cancer drugs or chemo. It helps your body to recover more quickly.

How much Ambrotose did you take? I have taken a little of it.

I started out taking a teaspoon 2x a day last fall.(2004) One of the doctors that works for Mannatech told my friend that if you have an illness, you can take up to a tablespoon 2x a day. The more the better! It won't hurt you, it's just like food. It's not herbal or medicinal. I now take 1/4 teaspoon 2x a day, like the container recommends. Also, I take the Ambrotose bulk, which is the powder. You also have to stay on it for at least 3-4 months sometimes to see results. The first week or two, it made my face break out a little and I had a few minor headaches, but I was told that might happen because your cells are reacting to a change in your body. Apparently if you have any of those things occur, that means it's helping. They went away after the first 2 weeks and I felt great! It also helps mental alertness, which can sometimes be a problem when you have liver cancer or tumors. I noticed a difference after about 4 weeks. Hope this info helps!

The advice about Ambrotose was very helpful.

Where did you have your liver transplant done? Do they feel that you are now out of danger?

I am considering a treatment in Houston or New Orleans with Pentatreotide and targeted radiation with Indium 111. Have you heard anything about this?

I sure appreciate your attention during this time of making decisions. Thanks.

I was approved for a liver transplant last December and I will say that it is very rare to get approved if you've had cancer. If a person's body is prone to grow cancerous cells, they assume that it will return somewhere else in the body eventually. However, my doctors ran numerous tests all over my body and couldn't find cancer anywhere else except my liver. (My original tumor was in my pancreas, but they were able to remove the entire tumor, which was about the size of a grapefruit, so they said if it came back it would be in the liver, which it was.) It is a long process to get approved for transplant and my doctors worked diligently to get me approved. They felt they could prolong my life long enough to raise my children. Even though I had the transplant, I'm not out of the woods. Like I said, if your body produces cancerous cells, it's likely to do it again. That's why I take the Ambrotose. I really feel that my cells are working properly now and that it won't come back if I continue with complete nutrition. I also cut out junk food, sugar, most red meat and drink green or black tea everyday. I have never heard of the type of treatment that you are considering, but I know that there are all different types of tumors and it's possible that the pentreotide treatment would not have worked for me. My doctors said that there were very few drugs that were really effective on the liver and they felt that any type of chemo would make me sicker. I have a cousin that is a surgical oncologist and he has a few patients with cancer that metastisized to the liver and he has them on chemo and they have done pretty well, but he said that the tumors usually come back after the chemo is stopped. I live in Louisville, KY and have an excellent team of doctors that work at the Graham Brown Cancer Center. If you're not sure about your treatment options, I would suggest doing a lot of your own research on the web, as well as get a second opinion. Cancer is different in everybody and you have to find what works for your body.

My father has pancreatic cancer. I am trying to find a success story so I can advice him with something. The cancer is on the body of the pancreas and we cannot yet remove it. They told us it depends of how the chemo will go. It has already been spread to the liver. And i am just wondering if he can take this ambrotose. Where can i found it? I am from Greece.
Thank you

Ambrotose complex powder can only be purchased through the company or through a distributor. I ordered mine online from Mannatech. Make sure if you order it, you order the complex powder. I'm sure he could take it. It's a nutritional supplement, not an herb or a medicine. It doesn't have anything in it that will harm the body. It's like eating a bunch of vine-ripened fruits and vegetables. If you read the article on the main page of the cancercompass website about nutrition, it mentions the effects of eating the right foods such as broccoli and cabbage. Ambrotose gives you the nutrition that most of us don't get from our everyday diets. I can't tell you how glad I am that I started taking it. I truly believe it will help your father. Most doctors are skeptical of it because most have never heard of it, but if you do some research on it you'll find that the way the product works makes sense. I found it helpful to take my treatment into my own hands. Cancer responds differently in every body and doctors are not always aware of every treatment option available, depending on the type of cancer it is and what part of the world we live in. Let me know if you need more information. I've also heard from a doctor that works for the company that it reduces the side effects of chemo.

Thanks for your information. The problem is that as i said i am from Greece and there is no place here to order it. I called the Mannatech company in UK and they told me that i cannot order it because they can not send anything aboard. Anyway I will try to find another way to buy it. Can i ask you something else? My father has an inoperable tumor on the body of the pancreas and he is going to take his next chemo on the 8th of December. He has a lot of pain and he feels like something is burning inside him. Did you have the same symptoms? What did you take for the pain? He is not sleeping well and to be honest I think that this has to do with his stress. His mind can never stop thinking.

I'm sorry to hear that your father is in pain. Have the doctors discussed the possibility that he may have gallstones or pancreatitis? I had some pancreatitis after part of my pancreas was removed in 2002, but after a few months it went away. Pancreatitis occurs when your digestive enzymes start eating away at the pancreas itself when it is not working properly. It can be caused by tumors, gallstones or bad diet. When I did have pain, I had to lay down and wait for it to go away. It also helped to not eat fatty foods or food that was difficult to digest. I didn't have a burning feeling, though, so it may not be the same thing. I did read on the internet that there is a medicine that can be taken with food to help with digestion which may help to prevent the pain. Check with his doctors. I will check on how you could order the Ambrotose as well.