CancerCompass message board discussion started by Tigerlillygal on 11/16/2005 http://www.cancercompass.com/message-board/message/all,3491,0.htm Thu, 24 Jul 2008 00:00:00 GMT Thu, 24 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ 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. Tigerlillygal Wed, 16 Nov 2005 00:00:00 GMT 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. Kimgee Sun, 20 Nov 2005 00:00:00 GMT How much Ambrotose did you take? I have taken a little of it. Tigerlillygal Sun, 20 Nov 2005 00:00:00 GMT 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! Kimgee Sun, 20 Nov 2005 00:00:00 GMT 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. Tigerlillygal Sun, 20 Nov 2005 00:00:00 GMT 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. Kimgee Sun, 20 Nov 2005 00:00:00 GMT 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 Nicoleta Sun, 27 Nov 2005 00:00:00 GMT 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. Kimgee Sun, 27 Nov 2005 00:00:00 GMT 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. Nicoleta Tue, 29 Nov 2005 00:00:00 GMT 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. Kimgee Tue, 29 Nov 2005 00:00:00 GMT My husband has pancreatic cancer IV. He started out with jut Tylenol for the pain. Now he's on Methadone - 2 and a half pills a day. For 'break out pain', he takes Vicadin when needed. I understand he'll be taking morphine before we lose him. This cancer is reported to be the most painful. Tambar Thu, 01 Dec 2005 00:00:00 GMT Hi Nicoleta - our daughter drew our attention to your discussion on your father's pancreatic cancer. My husband has been diagnosed with neuroendochrine cancer in the abdominal area including the pancreas which follows a previous bout of neuroendochrine cancer of the lymph nodes under the right arm approximately one year ago. Following surgery, radiation and chemo therapies he was declared in remission in March this year. Unfortunately, in September this year, abdominal pains indicated (and proved to be)the return of neuroendochrine cancer. He commenced a new series of chemotherapy two weeks ago. With regard to the pain that your father is suffering, my husband had a day-surgery procedure called "Celiac-Plexus Nerve Block" which blocked the nerves from which the pain eminated. The procedure was performed in the Wesley Hospital, Brisbane, Australia, and afforded immediate general pain relief. We understand that the procedure is effective for up to three to four months. Some supporting minor pain relief may be required. You may be interested in the following web site: www.vhjoe.com/Volume1Issue3/1-3-184.htm Hope this helps. Downunder Mon, 05 Dec 2005 00:00:00 GMT Hello Kimgee, Thought you and your doctor might be interested in a treatment that has, until 6 months ago, been done only in the Netherlands, but with good success (total cure) for neuroendocrine cancer metastasized to the liver. I am going to Excel Diagnostic Imaging Center in Houston on March 27 for a treatment with Indium-111 in pentetreotide. It is radiation with high-dose octreotide that goes automatically to every tumor in your body, as I understand it. Their research coordinator, Jennifer, can be reached at (713) 341-3239. The physician's name is Dr. Delpassand. Marie Tigerlillygal Mon, 13 Mar 2006 00:00:00 GMT Marie, That is definitely good news! How did you find out about this treatment? I had a routine CT scan done two weeks ago and they found a small tumor in the area of my pancreas. It appears to be a leftover remnant of my original nueroendicrine tumor from 2002, that has just now grown enough to be seen, and it is hidden near my kidney. My doctor said the only effective way to get rid of it is to remove it. I don't want to be ripped open again. I'm feeling better than I have in my life and I don't want to be ripped open again. I would really like to know more about this treatment, as my surgeon wants to do surgery in the next couple of weeks. Kim Kimgee Mon, 13 Mar 2006 00:00:00 GMT Marie, I forgot to tell you what I've learned about the Ambrotose as well. I found out from a doctor that has seen results with the product that I should be taking 4 tablespoons a day plus the antioxidant. I was taking way too little! I have taken the recommended dosage for a week now and I can't believe how great I feel. I'm hoping it will help to shrink my tumor. I really don't want anymore surgery. Kimgee Mon, 13 Mar 2006 00:00:00 GMT Hi Tigerlillygal I'm wondering how the treatment at Excel Diagnostic with Indium III /pentetreotide went. I hope well. We are wondering what to do next with neuroendocrine pancreatic cancer. Surgery isn't an option. Thank you Annetta Thu, 22 Jun 2006 00:00:00 GMT Dear a H, I had the treatment at Excel in Houston on April 5 after a week of testing there. The treatment, itself, was completely without any side effects and lasted for about five hours, just sitting in a chair with an IV. When I first came home, I was a little more tired than usual, but feeling fine. I am still feeling better than I have in years and my doctor here says my blood work is perfect. In order to tell the actual results of treatment, I will have to have another Octreoscan to compare with the one they did before the treatment, but the doctor there was very encouraging and, again, I feel wonderful for the first time in ages. I walked 7 miles the other day and I am 61 years old. Believe me, I was skeptical at first, but now I would encourage you to look into it with the advice of your doctor. My doctor felt it was the ONLY option for me without ruining my quality of life and the only way for a POSSIBLE cure. (They don't promise anything, however). Tigerlillygal Thu, 22 Jun 2006 00:00:00 GMT Dear Marie, Read about the positive effects of the treatment with Indium-111 in pentetreotide that you underwent at Houston....does sound encouraging!! My mother was detected with neuroendocrine tumor that had metastasized to the liver in 2003. She was only prescribed Tomaxifin initially and was later started on monthly injection of Sandostatin LAR in 2005 as she had severe diarrhea. The tumour hasn't shown a significant growth since. She has however started getting very unbearable pain in the stomach and the back lately. I was wondering if you ever experienced the same and if Ambrotose or the treatment with Indium-111 in pentetreotide would work for her? Shilpi Shilpi Thu, 10 Aug 2006 00:00:00 GMT Dear Shilpi, I have not yet had any pain and am very thankful to be able to say that. Sorry your mother is having such a bad time. I don't know much about the Ambrotose (Kimgee is the one on this message board who told me about it). But, I just got back from another treatment in Houston. They said some of the tumors shrunk substantially from the first treatment, which must be why I feel so well. The doctor told me the first treatment stabilizs the disease, and one can have another treatment 3 months later to shrink the tumors more. If you really want to look into Excel in Houston, I would suggest you call there and ask to speak with Dr. Delpassand. He will explain everything and will let you know if your mother's situation can be treated this way. Best wishes, Marie Tigerlillygal Thu, 10 Aug 2006 00:00:00 GMT I read how well your treatment went in Houston Marie. My dad has neuroendocrine cancer in his liver-no where else but the tumors (too numerous to count) and several as big as baseballs. We went to Duke Unv and met w/ Dr Gockerman and discussed (it sounds like) the same IBG therapy but decided against because of the conflicting reports we were getting from staff versus Dr. How extensive is your cancer and what type of scans did you have? Also you gave a phone number in one of your posting-Is that still a good number? Being a nurse myself I tend to like to talk to a helpful person. Thanks for your information and congrats on feeling great. Makes me want to think twice now about this treatment plan. Lee Abbysmom Tue, 12 Sep 2006 00:00:00 GMT Hello, Abbysmom, Kimgee, Tigerlillygal, Nicoleta, Downunder, Shilpi, and Anyone else. This is my first time at the site. I am an 8 year cancer survivor!!!!....using all natural treatment. I was diagnosed with stage three of three stages of adenocarsonoma breast cancer...the fastest and deadliest kind which had already spread . After surgery, I postponed the chemo and radiation because I was so ill from pneumonia, adrenal exhaustion, hypoglycemia, pernicious anema, allergies, and osteoarthritis and looked for ways to get healthier, first. That led me to doctors and treatments from Oklahoma to Denver, but I have overcome the cancer and regained my health. I not only survived....I now thrive after years of illnesses. Besides my own success, I personally know of such results with lung, bone, brain, and pancreatic cancer. If anyone wants more information of using Ambrotose and getting it at the lowest cost, I know how to do so. You may email me --- Message edited by CancerCompass staff: for personal protection, email address and phone number removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----and ask for Linda. Blessings to all. Survivor8 Wed, 04 Oct 2006 00:00:00 GMT Marie, I am looking for clues and answers. How did your treatment go and would you recommend it to someone in the same circumstance? Ellie Ewj851 Mon, 16 Oct 2006 00:00:00 GMT Hello, Ellie, The treatment in Houston seems to be a blessing, at least to me. Before the first treatment I was experiencing confusion, headaches, and very bad muscle cramps. All of those were gone in a month or so and have not come back. My blood work was pretty good before treatment, but now is perfect and there was shrinkage of some of the tumors. I also have a Sandostatin injection every month because my tumors have receptors for it, and having those receptors to carry the radiation into the tumors is also necessary for the Houston treatment. To find out if you have them,you will need an Octreoscan. In July, I had a second treatment (three months later), but have not yet found out the results of that. The FDA has not yet approved a third treatment, because they are waiting to see how patients do on the first two. I still feel fine and am functioning well. Also, my insurance paid for everything! Yes, I would recommend the treatment to anyone who meets the conditions for having it. Best wishes. Marie Tigerlillygal Mon, 16 Oct 2006 00:00:00 GMT My grandfather was just diagnosed with neuroednocrine pancreatic cancer and although I am a nurse I don't know that much about it. My family is really frightended and looking towards me for advice. I wish I could help them. What kind of prognosis is there for him? What kind of treatments are available? His physician says the tumor is inoperable, but I don't know why they can't do a whipple procedure. Any inisight or information would be greatly appreciated, thanks. Mandibsn Tue, 24 Oct 2006 00:00:00 GMT Dear Mandi, Don't feel bad not knowing much about this disease--I just attended a conference in Portland, where there were about 20 specialists in this from all over the world, and they said most oncologists don't know very much about it, either, because it is so rare they very rarely see it or hear about it. It is good that they even diagnosed your grandpa. Did his doctor suggest an Octreoscan? It could tell you if he has receptors for Sandostatin, which helps greatly to control the formation of scar tissue in bloo vessels as well as generally control the cancer. Besides that, if his tumors do have receptors for it there are several treatment options such as a radiology treatment at Excel Diagnostics in Houston, TX. There is also a clinical trial which will soon be done in many cities in this country with RADIANT 001, which is a similar to the one I just mentioned, but does not require one to have the receptors. Also, 5Fluorouracil is a chemotherapy treatment that helps some people. There are five subtypes of this cancer, and each one is managed a little bit differently. You can find out a great deal from the website www.Carcinoid.org They sponsored the conference I mentioned, and I think they even plan to make all the doctor's talks available on line. I had two radiations treatments in Houston, and they seem to have no side effects, at least for me. You may know that this type of cancer is very slow growing, but of course, the prognosis depends where it is. When I had the pancreatic tumor removed in 1998, they told me I had probably had it for 10 or 15 years. If it had been impinging on an artery or another organ, though, it would have caused more problems sooner. My islet cell cancer has metastasized to the liver and is inoperable because there are many small tumors in both lobes. If it is confined to one lobe, sometimes they can do surgery. This may also be his situation with the pancreas, I don't know. If you have any questions please feel free to contact me again. Best wishes to you and your grandfather. I still feel fine and am functioning well. Tigerlillygal Fri, 27 Oct 2006 00:00:00 GMT Hey all! I read all of the messages about the people's experiences with these neuroendocrine tumors. Let me tell ya' my story and we can trade info or what not. My husband was diagnosed in 2001 with a neuroendocrine tumor in his pancreas. It was in the head of his pancreas and was pinching his bile duct closed causing him to jaundice. This is the symptom that brought it to our attention. The doctors here in TN told him to go home and get comfortable there is nothing they can do for him. Someone told us about MD Anderson in Houston. We went there and they did the Whipple procedure and removed the tumor. All went great there but they discovered it had metastisized to his liver. Numerous tumors in his liver. MD Anderson suggested the treatments a couple of you were talking about at Excel in Houston, but at the time they weren't doing it and we went to the Netherlands. We went there 4 times for 4 treatments. They were done about every 2 1/2 months. His last treatment was almost 5 months ago. His last scan showed there wasn't any shrinkage, but that there had been no growth to the tumors since his scan in January so that is great news! The only problem he is having right now is VERY low blood counts, but they are improving. He is working everyday so it hasn't effected him too badly. I have never heard of the Ambrose and am definitely going to look into it. PLEASE guys, keep posting messages with updates and if I can help pass any info along please let me know. Take care and God bless! Karina Karina62874 Tue, 05 Dec 2006 00:00:00 GMT I had 20 tumors metastasize to the liver four years after removal of a pancreatic tumor. I now have 3 small tumors, and one lobe of the liver is free of tumors after the 2nd treatment at Excel Diagnostics in Houston. Tigerlillygal Wed, 06 Dec 2006 00:00:00 GMT  On 10/4/2006 Survivor8 wrote:Hello, Abbysmom, Kimgee, Tigerlillygal, Nicoleta, Downunder, Shilpi, and Anyone else. This is my first time at the site. I am an 8 year cancer survivor!!!!....using all natural treatment. I was diagnosed with stage three of three stages of adenocarsonoma breast cancer...the fastest and deadliest kind which had already spread . After surgery, I postponed the chemo and radiation because I was so ill from pneumonia, adrenal exhaustion, hypoglycemia, pernicious anema, allergies, and osteoarthritis and looked for ways to get healthier, first. That led me to doctors and treatments from Oklahoma to Denver, but I have overcome the cancer and regained my health. I not only survived....I now thrive after years of illnesses. Besides my own success, I personally know of such results with lung, bone, brain, and pancreatic cancer. If anyone wants more information of using Ambrotose and getting it at the lowest cost, I know how to do so. You may email me --- Message edited by CancerCompass staff: for personal protection, email address and phone number removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----and ask for Linda. Blessings to all.Greetings 8 Year Cancer Survivor and Ambrotose (Linda)my Mother in Law recently has been diagnosised with Neuroendocrine cancer, which they think started in her appendix and she several metatasis in her liver.  This cancer is very rare and slow growing and she currently does experience any of the major symtoms on a cronic or consistant basis.  For this we are greatful.  However, we and the Doctors still are not sure how quickly or stable her cancer is .  If it growing or not.  We have heard about Ambrotose from this  web site along with other unsolicited people in our area, simply in conversation.  I am interested in purchacing Ambrotose for her and you stated that you have a source that can it at half price.  Can you either call me or provice me with this information?  --- Message edited by CancerCompass staff: for personal protection, email address and phone number removed.  Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----   In addition, what if anything do you know or have research about similiar glyconutrients such as: Glycomannan, nutratose, GlycoBalance, Limuplex and Immuno Plex?I would be gratfull for your responce and input anything you might be able to share with me and my family.  I hope you continue in good health and that you enjoy a very Happy and healthy Holiday Season! Thanks for your time, Sincerely, David David on Long Island Wed, 13 Dec 2006 00:00:00 GMT Hello.  I look forward to any information you may be able to provide for me concerning Ambrotose and your experience with it.  I have a client in my hometown who mentioned it to me just last week.  I was having lunch with a little girl suffering from brain cancer, in very high spirits, but undergoing serious treatments.  He wanted to mention it to me as he knows several people who have had magnificent results with it when there were no more places to turn.  If and when you have a moment to share, I would certainly appreciate a response.  I am hoping this may be something from which my little friend can obtain great benefit.thank you very much,Carola Moksha Sat, 16 Dec 2006 00:00:00 GMT Hi.  My story is quite lengthy and I have several posts under liver cancer, supplements and probably some other subjects under the name kimgee.  In 2002, I was diagnosed with a large pancreatic tumor that needed to be removed.  Surgery was done, tumor had spread to liver, tumors were burned off liver, but was told they would recur because of the liver regenerating. I also accidentally had a hole burned in my esophagus from tumors being burned off the liver.  Prognosis was not very good for the cancer or the esophagael problems.  I prayed for an answer and Ambrotose showed up at my door two days later by a dietician friend of mine.  Began taking it in fall of 2002.  I was told it would make me healthier by supplying my cells with nutrients that we no longer get in our modern day diet and strengthen my immune system.  I was told that many people with cancer had had great results with the supplement.  My husband and I spent weeks researching the supplement, the company, as well as all types of nutrition information regarding cancer.  (I believe that all of the chemicals and preservatives in our food and environment have caused our cells to work inefficiently, thus keeping our bodies working properly.)  I noticed increased energy in a matter of weeks, and after 2 months, I felt better than I've felt since I was a teenager.  (I'm 41)   My liver tumors began recurring, and I had several procedures done to remove them, but they kept coming back.  After being cancer-free everywhere else, I convinced my doctors (after months of begging) to be considered for liver transplantation.  I finally convinced the doctors that I was a good candidate, was tested and approved, and had a liver transplant in 2005.  Had complications with esophagus, deadly virus, a ruptured colon from a feeding tube, and almost died twice while being in the hospital for 2 1/2 months.  I was taking Ambrotose from 2002 - 2005, up until I went into the hospital, even though my doctors told me not to because they didn't really know what it was.  When they did the transplant, they said the old liver showed evidence that my body was fighting the cancer, because the tumors were being walled off.  As soon as I was home, I went back on a full-line of the Mannatech products and have been doing great ever since.  I'm on very low doses of anti-rejection medicine, never had chemo, esophagus is healed, my monthly labs are spectacular and last CT was clean.  I have everyone in my family on Mannatech products including my kids.  My aunt was diagnosed with Multiple Myeloma last year and was very sick.  I got her started on large doses of Ambrotose, and she called me last Wed. and said her recent tests were all clear, blood work was perfectly normal, and her bone lesions were gone.  She feels great!  A lot of naysayers will say the product is worthless and doctors don't support it (unless they've had personal experience with it or have had training in alternative therapy), but most people who have used it have gotten miraculous benefits from it.  It's been a miracle for me and my family.  Some people are not open to the supplements because of the cost and because Mannatech only sells them through distributors or online.  (They are the only company that has a patent on the products and they sell worldwide.)  I don't push the product on people, but I feel like I have to share what I've learned and what has worked for me in hopes of it helping others like it has me.  If you need more info, please feel free to ask.  You can get more info on glycoscience.org.  I hope this helps your friend.  It seems to work especially well on young people.  Kimgee65 Mon, 18 Dec 2006 00:00:00 GMT Linda,Can you give me any success stories of people with bone cancer who have used Ambrotose.Thank you,--- Message edited by CancerCompass staff: for personal protection, email address removed.  Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----    Hatty Tue, 06 Feb 2007 00:00:00 GMT I was diagnosed in aug '99 w/ neuroendocrine tumor of the pancreas known as metastatic malignant insulinoma. The tumors can make insulin. I had chemo, surgery (got all the cancer in pancreas and liver)..recurrence in july 01, used supplements etc...tried thalidomide/temedor; in nov 03 had the Lutieum octreotate in Rotterdam netherlands, 4 treatments in one year. Successful shrinkage of tumors but 7 mos after the last therapy, cancer started growing so quickly, I had an embolization, then started on abraxane, carboplatinuim, avastin, shrinkage again, stabilization for 6 mos. then started a trial of RAD001 at MD Anderson inNOV 06 until may 07. off treatment but am being considered for the indium 111 in houston at excel. Anyone have any experience w/ that...the cost? was it covered by insurance? any damage to kidney or bone marrow evident? anyone wanting more info on how I have survived for 8 yrs w/ my disease, email me....thanks. taj brown, tx Momoffive Thu, 05 Jul 2007 00:00:00 GMT My mother (67) was diagnosed with neuroendrocrine cancer in 2004.  Could not find primary - but it had matastesized to her liver.  Too many small tumors in the liver to be a surgery candidate.  She had one round of Chemo and then did well for a while.  In March 2007 they went in to find what they thought was a small bowel intercesion.  They found no intracesion but finally found small tumor (about quarter sized) on her pancreas (likely the primary tumor).  They did not remove it since it was so small and not causing any real problem.  But they did find that her liver has a lot of cancer in it. Her oncologist in Nebraska has recommended doing very targeted treatments on the liver to try to kill some of the liver cancer (do not remember name of treatment - but it is the one where they block blood supply to parts of liver)   Went to specialist in Iowa City that suggests Sandostatin and further tests to determine if she is candidate for some clinical trial drugs.No one will really tell us too much but I do not think the prognosis is very good.  She has had many illnesses (I think related to the cancer but that has not been confirmed by her doctors).  From what I can tell - there is real concern that her liver will fail.  Will look into Ambrotose.  Will also ask doctors about the Excel Diagnostic Treatment.I wish everyone with this disease well.  It has been a trying couple of years for us.  Not many doctors seem to know much about this cancer and there seems to be no standard protocol for treating it.  The advice gathered here is appreciated.  I will continue to monitor.  Would love to hear more results or finding on the effectiveness of the Excel Diagnostic Treatment. Thanks and good luck to all. Inomaha Wed, 11 Jul 2007 00:00:00 GMT I am sorroy to hear about your mother and the trials. I know how that is. I am not able to have the treatment at excel diag. b/c it costs 20,000 and my insurance won't say whether or not they will cover any of it until after I pay for it up front. I don't have the money so no can do. My dr. in MD Anderson said it won't help anyway....Dr. O'dorisio in Iowa city (is that who you saw) said that was his recommendation....he also rec. high doses of sandostatin. the Drs. differ in w hat they think will help...but no one k nows. I think seeing   Dr. Yao in houston at MDA is worth it....they have some clinical trials that would do well like the RAD001, maybe it is other places. What about proton beam therapy? or ablation for the liver? If you need numbers or further info, contact me back. Take Care. taj brown Momoffive Thu, 12 Jul 2007 00:00:00 GMT  On 11/16/2005 Tigerlillygal wrote: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.My husband has inoperable neuroendocrine lung, liver and abdomen cancer and he has just had his first sandostatin injection, do you feel that has helped you?  Garrett has no other symptoms except stomach bloating and fatigue.  He does not have the diaheria or flushing I keep reading about.  It took us 3 months to get a diagnosis. We need to find out other options of treatment.  Gail Byrnes, Atlanta, GA. garzy Mon, 10 Dec 2007 00:00:00 GMT  On 12/10/2007 garzy wrote: On 11/16/2005 Tigerlillygal wrote: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.My husband has inoperable neuroendocrine lung, liver and abdomen cancer and he has just had his first sandostatin injection, do you feel that has helped you?  Garrett has no other symptoms except stomach bloating and fatigue.  He does not have the diaheria or flushing I keep reading about.  It took us 3 months to get a diagnosis. We need to find out other options of treatment.  Gail Byrnes, Atlanta, GA.Gail, I have had neuroendocrin tumor since 2002, originally  it was mainly in the pancreas and liver, but now seems to be moving. I have been on Sandostatin for over two years and it was recommended both by medical oncologists and surgeons. However, only when the tumor was non moving Sandostatin was recommended on a stand-alone basis; in all other cases, I was given also many other chemos (various combinations of really powerful ones). I was at the George Washington University Hospital in DC at the time, with prof. James Ahlgren. Hope this helps. Marco  handy29 Tue, 08 Jan 2008 00:00:00 GMT  On 7/5/2007 Momoffive wrote:I was diagnosed in aug '99 w/ neuroendocrine tumor of the pancreas known as metastatic malignant insulinoma. The tumors can make insulin. I had chemo, surgery (got all the cancer in pancreas and liver)..recurrence in july 01, used supplements etc...tried thalidomide/temedor; in nov 03 had the Lutieum octreotate in Rotterdam netherlands, 4 treatments in one year. Successful shrinkage of tumors but 7 mos after the last therapy, cancer started growing so quickly, I had an embolization, then started on abraxane, carboplatinuim, avastin, shrinkage again, stabilization for 6 mos. then started a trial of RAD001 at MD Anderson inNOV 06 until may 07. off treatment but am being considered for the indium 111 in houston at excel. Anyone have any experience w/ that...the cost? was it covered by insurance? any damage to kidney or bone marrow evident? anyone wanting more info on how I have survived for 8 yrs w/ my disease, email me....thanks. taj brown, txMy wife has a large liver adenocarcenoma secondary to bile duct cancer.With either the diag of biliary or unknown primary, there are little resources and trials available.The doctors first diagnosed it as unknown, but with an initial CA19-9 of nearly 2700 Gemzar/Carboplatin worked for 4 months Xeloda and Oxaliplatin, failed to work, we had some progression ann a jump in CA 19.  We are trying to use the G-FLIP protocol with Dr. Howard Bruckner, but have insurance problems leaving Mass.I would like to keep my wife around for at least another 8 years, any ideas would be appreciated.ThanksMurray Octopus79 Tue, 12 Feb 2008 00:00:00 GMT hi there, i read your post.  my husband has similar story to yours.  he has nueroendocrine pancreatic cancer.  he just had tail of pancreas removed where his primary tumor was.  his cancer has metastasized to his liver and they have told us we are a candidate for a liver transplant.  i wanted to follow up with you and see where you are with your treatment and if did have your liver transplant.  thanks for any advice you may have. thanks,Jenna On 11/20/2005 Kimgee wrote: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.  Jenna63 Tue, 12 Feb 2008 00:00:00 GMT  hi there, my husband has same cancer (except his was in tail and they removed the tail of his pancreas).  he was just diagnosed Nov 2007.  he has many tumors in his liver.  what treatments in the Netherlands did you husband have for these tumors?  thx for any advice you may have.Jenna  On 12/5/2006 Karina62874 wrote:Hey all! I read all of the messages about the people's experiences with these neuroendocrine tumors. Let me tell ya' my story and we can trade info or what not. My husband was diagnosed in 2001 with a neuroendocrine tumor in his pancreas. It was in the head of his pancreas and was pinching his bile duct closed causing him to jaundice. This is the symptom that brought it to our attention. The doctors here in TN told him to go home and get comfortable there is nothing they can do for him. Someone told us about MD Anderson in Houston. We went there and they did the Whipple procedure and removed the tumor. All went great there but they discovered it had metastisized to his liver. Numerous tumors in his liver. MD Anderson suggested the treatments a couple of you were talking about at Excel in Houston, but at the time they weren't doing it and we went to the Netherlands. We went there 4 times for 4 treatments. They were done about every 2 1/2 months. His last treatment was almost 5 months ago. His last scan showed there wasn't any shrinkage, but that there had been no growth to the tumors since his scan in January so that is great news! The only problem he is having right now is VERY low blood counts, but they are improving. He is working everyday so it hasn't effected him too badly. I have never heard of the Ambrose and am definitely going to look into it. PLEASE guys, keep posting messages with updates and if I can help pass any info along please let me know.Take care and God bless!Karina  Jenna63 Tue, 12 Feb 2008 00:00:00 GMT Hi, I had my liver transplant in Dec. 2005 and am doing great now.  I did have one small tumor in the original location (pancreas) return in April 2007, but they removed it easily and I haven't had any additional problems.  The surgeons told me that with neuroendicrine tumors, they are likely to return over time in the original location, if any cells were missed during the surgery, so it wasn't a surprise.  I have a CT scan about every 6 months, have labs drawn once a month to check my liver levels, but I'm in the best health I've ever been in.  The liver transplant is a big surgery, and I had several complications (not due to the transplant itself), but my liver is doing great.  Once you get through the initial surgery, labs are done frequently and it takes a while to get back on your feet, but my life is pretty normal.  I take very few anti-rejection meds, (only 1, actually) and I do everything I used to do before the surgery.  I do take a lot of vitamins and nutritional supplements and follow a diet of fresh (and organic) fruits/vegs, lean meats, lots of water, green tea, exercise, and get plenty of sleep.  I think that has helped a lot, in regards to my health and not much recurrence of tumors.  I hope things go well for your husband.  If I can answer anymore questions, just ask.  Kimgee65 Wed, 13 Feb 2008 00:00:00 GMT  Hi there, first let me say thank you so much for responding to my email.  and i apologize that it has taken me forever to reply back.  our story starts with my husband who is 35 yrs old being diagnosed with Metastatic Pancreas Nueroendocrine Cancer 13 days after the birth of our first son.  my husband was diagnosed on Nov 29th 2007.   whenever i have to recount our story to someone it brings it all up again and my emotions of course are very high.  we are still so new to all of this.  just hearing that you had what my husband had and you had the primary cancer source removed and then a liver transplant gave us soooooo much hope when we read your postings. so thank you for the hope you have already given us.  i just kept telling our family when this all happened we must keep hope, without hope what do you have.  on Jan 28th Mark had the primary tumor removed from the Tail of his Pancreas.  and now we go back to UCLA on March 17th for a 3 day Liver Transplant Evaluation, in hopes of getting on the list.  my husband has 8 tumors on his liver.  so sorry it has taken me so long to reply.  i am taking care of the newborn and back to work full-time, so my life is constantly on hyper-speed.  any advice on the liver transplant aspect of things would be so helpful.  we know how rare it is for cancer patients to get a liver transplant, and when i saw your posting on the internet back in December your story is the hope we needed to hear.  again any advice you have would be great.  currently my husband is having Sandostatin injections once a month to treat the liver tumors.  did your oncologist have you on a regime of things before you had your transplant?  how long did you have to wait once on the list to receive the transplant.  and please know my husband and i are so excited to hear how fantastic you feel.  that makes us so happy.  your family must be so thankful.  again thanks for your time and for reading my email.  sincerely,Jenna On 2/13/2008 Kimgee65 wrote:Hi, I had my liver transplant in Dec. 2005 and am doing great now.  I did have one small tumor in the original location (pancreas) return in April 2007, but they removed it easily and I haven't had any additional problems.  The surgeons told me that with neuroendicrine tumors, they are likely to return over time in the original location, if any cells were missed during the surgery, so it wasn't a surprise.  I have a CT scan about every 6 months, have labs drawn once a month to check my liver levels, but I'm in the best health I've ever been in.  The liver transplant is a big surgery, and I had several complications (not due to the transplant itself), but my liver is doing great.  Once you get through the initial surgery, labs are done frequently and it takes a while to get back on your feet, but my life is pretty normal.  I take very few anti-rejection meds, (only 1, actually) and I do everything I used to do before the surgery.  I do take a lot of vitamins and nutritional supplements and follow a diet of fresh (and organic) fruits/vegs, lean meats, lots of water, green tea, exercise, and get plenty of sleep.  I think that has helped a lot, in regards to my health and not much recurrence of tumors.  I hope things go well for your husband.  If I can answer anymore questions, just ask.   Jenna63 Mon, 03 Mar 2008 00:00:00 GMT  On 10/4/2006 Survivor8 wrote:Hello, Abbysmom, Kimgee, Tigerlillygal, Nicoleta, Downunder, Shilpi, and Anyone else. This is my first time at the site. I am an 8 year cancer survivor!!!!....using all natural treatment. I was diagnosed with stage three of three stages of adenocarsonoma breast cancer...the fastest and deadliest kind which had already spread . After surgery, I postponed the chemo and radiation because I was so ill from pneumonia, adrenal exhaustion, hypoglycemia, pernicious anema, allergies, and osteoarthritis and looked for ways to get healthier, first. That led me to doctors and treatments from Oklahoma to Denver, but I have overcome the cancer and regained my health. I not only survived....I now thrive after years of illnesses. Besides my own success, I personally know of such results with lung, bone, brain, and pancreatic cancer. If anyone wants more information of using Ambrotose and getting it at the lowest cost, I know how to do so. You may email me --- Message edited by CancerCompass staff: for personal protection, email address and phone number removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----and ask for Linda. Blessings to all.Hello. I need help please asap. My mother has advanced larynx cancer mets to the lungs told she has 3-6 months to live. I have heard of ambrotose and wondering if it works. I have my mother on some other items as well...not sure if they are working or not...budwing diet / acai / mangosteen...heard of any of these. I dont want to lose my mother...please any advice would be great asap... --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html -- Trish28 Sun, 16 Mar 2008 00:00:00 GMT Hi just found out that my uncle who is 69 yrs old has pancreatic neuroendocrine tumor and is about to have the whipple procedure done in about two weeks.we are very confuse about the procedure since the tumor is only 2cm and not cancer .if anyone out there has gone though this please contact me asap.thanks a head of time                              vicki vicmart54091 Mon, 17 Mar 2008 00:00:00 GMT Hello-I sent you an Email and I forgot to check (when someone responds).I have been told I have an islet cell tumor (don't know what kind).  I live in L'ville KY and wondered who you see. I hope you are doing well.  Thanks tatmom Thu, 24 Apr 2008 00:00:00 GMT Hi,My mom was recently diagnosed with neuroendocrine cancer.The tumor started in gallbladder and spread into liver.The doctor said that average survival with this type of cancer is about year and half with chemo.  Your story started in the latter part of 90's which means over 10 yrs of fighting this cancer.  I would like to know if there is anything I can do to extend her life and possibly cure the 'uncurable' tumor. jenny apple Mon, 14 Jul 2008 00:00:00 GMT