Neuroendocrine Cancer

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.

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.

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

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

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.

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

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).

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

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

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