Neuroendocrine Cancer

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

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.

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

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.

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

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, tx

My 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.

Thanks

Murray

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.

 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

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.