Neuroendocrine Cancer

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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

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Kimgee

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.

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Annetta

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

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Tigerlillygal

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).

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Shilpi

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

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Tigerlillygal

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

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Abbysmom

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

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Ewj851

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

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Tigerlillygal

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

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Mandibsn

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.

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