Neuroendocrine Cancer

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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.

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Karina62874

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

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Tigerlillygal

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.

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David_on_Long_I...

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

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Moksha

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

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Hatty

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 ----

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Momoffive

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

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Inomaha

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.

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Momoffive

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

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garzy

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.

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