Islet Cell Neroendecrine Carcinoma

my son is 33 years young and we just found out he has this neroendicrine he has 5 little children we are trying to get the best medical care so he could be around to rear his kids...it is pancrece islet cell that went to the spleen and liver,he started taking sandostatin for 3weeks and now they started him on sandostatin lar...thank god he feels good but i worry so much cant stop crying why this had to happen to him,the doctor recomends we go to europe for some treatments[basil or rotterdam]we need all the information we could get which hospital or doctor specialize in this desease thank you....

I was diagnosed with a neuroendicrine islet cell tumor in my pancreas(a very large one!) in 2002. It had spread to my spleen and liver. In 2002 I had surgery (a wipple procedure) to remove the tumor, spleen, gall bladder and had several lesions burned off of my liver. There are treatment options: chemo, RFA procedures, suregery, or embolization. I had an RFA (radio frequency ablation) done on one tumor in 2004, when the tumors started to show up again on my liver. They started growing more rapidly and the doctors didn't think they could keep treating them with the other options. After extensive testing, they decided that there was no cancer in any part of my body, and got me approved for a liver transplant. I was 39 and had 3 small children. I had my transplant in March and the doctors feel that I have a good survival possibility. It is rare to be approved for a transplant if you've had cancer, but if you're young, are in good health otherwise and have a good doctor, it can be done. When they biopsied my old liver, they did find that my body appeared to be fighting off the cancer. The tumors had a hard shell around them. I attribute this to a nutritional supplement I take called Ambrotose. It is a glyconutritional product that can be ordered from a company called Mannatech. A friend of mine that is a nurse got me started on it last fall. It gives you complete nutrition that we don't often get and helps your healthy cells communicate better, killing off the unhealthy ones. I did a lot of research on the product and decided to take it, and I'm so glad I did. I believe it prevented the growth of more tumors and kept them from spreading. Plus, it just made me feel so much healthier. I had more energy and I felt better than I had in years. I still take it.

My doctors never wanted to give me chemo because they felt it would make me sicker and feel lousy. I have heard of many liver patients taking chemo and it working to stop any more growths, but my doctors didn't think that was the answer. Every case is different. I'm not sure where you live, but I also checked into 2 clinical trial studies on new liver drugs at Washington University in St. Louis last year. I wasn't a candidate because my liver tumors were too small for them to measure. They had to be 1 cm in diameter and mine weren't quite large enough, even though I had many of them. I also hear that M.D. Anderson Hospital in Texas is one of the best for cancer treatments and new treatment options. There are options, you just have to do your own research and find out as much as you can. It is my understanding that neuroendicrine islet cell tumors are rare and I couldn't find anyone who actually specialized in that area. I'm glad your son feels good. Please try to stay posiitive and know that there are options out there.

Hi, I just read you message about your cancer that spread from you PC. I had a whipple 5 years ago at Barnes-Jewish and was looking pretty good until this Sept. and they found a leasion on my liver. After they had done a triple phase c.t. they found 3 more smaller ones. My Dr. said I wasn't a good candidate for surgery beings there is more thatn 1. I'm hoping I can get this new drug that they are having good luck with on neuroendocrine cells. I go back next Tuesday 1-3-06 to get the news. Have you got any info that I could use or tell my oncologist about? Thanks in advance. Doug

Have they done any RFA or embolization procedures on you? I had RFA a couple of times and embolization done twice. The doctors think this may have kept those tumors from growing any further. My problem was that I had too many tumors to count, but they were small. All 1/2 cm or less. I couldn't get approved for the clinical trial at Barnes Jewish because they had to be 1 cm or more and measurable by CT, and mine weren't big enough. Is this a new approved drug, or is it a clinical trial? I can't remember what the drug in the clinical trial was. I have a cousin in Evansville who is a surgical oncologist and he has a patient with the same thing that has been on chemo for the past year and it has stopped her tumors from growing. However, when they tried to take her off of it, they started to grow again. There were two drugs that were being used in clinical trials at this time last year, one in St. Louis, the other in Chicago or Columbus, OH, I think. You might try looking at clinicaltrials.gov if you haven't already. Sometimes there are new drugs out there that are being tried that our doctors don't know about. Let me know how things go.

Kimgee, thanks for answering back. The drug I found on the web is called SU11248. The article date is 5-17-05 and it was announced at the 2005 annual meeting of the american society of clinical oncology or asco. The article states that it apprears to hinder three types of protien and receptors that cancer cells need to thrive and appears to go after not only the cancer cells, but also the blood vessels that nourish cancerous tumors and the tissue that supports tumors in the body. My Dr. told me in Sept. that there was a new drug out that showed promise for the neuroendocrine cell but, it hadn't been approved yet. I'm going to ask about this and see if it is the one he was talking about. I've already had a whipple back on 11-03-00 and had radiation and chemo following the surgery. I was doing good until this Sept. then they found a spot on my liver. They did a triple phase ct and found 3 more smaller ones. He told me that if I had only the one that I would be a good candidate for surgery but, since they found 3 more it was not an option. I was 47 when they found it in my pancreas and I've made it 5 years now. I turned 53 12-10-05. I can't complain cause I got 5 years out of it. But, I'm still looking for some options. It sounds like you are doing good! I'm very glad. It's good to hear good news about this stuff. I found this chat board yesterday and couldn't believe how many people around the U.S. that are affected by pc. My thoughts and prayers go out to every one of you guys. I'm a strong believer in the power of prayer. I know it has helped my family and myself get by! I'll keep you posted on my findings and would appreciate any info that anyone finds or know about. God Bless all of you! Thanks. Doug

Thanks for the drug info. I hope it is something you can take and that it will work for you. I'm always searching for new treatment options just in case. I think the SU11248 is one of the drugs in a clinical trial that I was checking on before I went in for my transplant. They are making advances! I, too, believe in the power of prayer and you'll be in mine. Check into the Ambrotose as well. I truly believe the product improves health and stopped my tumors from growing any further. I found it through the power of prayer, too! Let me know how things turn out next week. Kim

 

On 12/29/2005 Doughbelly wrote:

Hi, I just read you message about your cancer that spread from you PC. I had a whipple 5 years ago at Barnes-Jewish and was looking pretty good until this Sept. and they found a leasion on my liver. After they had done a triple phase c.t. they found 3 more smaller ones. My Dr. said I wasn't a good candidate for surgery beings there is more thatn 1. I'm hoping I can get this new drug that they are having good luck with on neuroendocrine cells. I go back next Tuesday 1-3-06 to get the news. Have you got any info that I could use or tell my oncologist about? Thanks in advance. Doug

Hi:

Dr. O'dorisio in Iowa city U of I ,has some people go to Basel Switzerland , when appropriate, for a targeted radiation that is not available here.

What new medicine is you doctor talking about? I would be very interested. My husband has the liver mes also although it is not progressing. He had surgery over a year ago.

 

Thanks good luck

Mary