Neuroendocrine Carcinoma

Rribbit said:

Fellow gyn neuroendocrine
Hi Chris - you still on this site - I am stage 3/4 endometrial neuroendocrine carcinoma. Would love to know how you were treated, where and how you fared....

cups368 said:

neuroendocrine carcinoma
Hi my name is Andrea and my husband was given the news 7weeks ago. It has spread to the liver. We are waiting to start chemo. It is low grade and well defferinated. (sorry about the spelling, learning a lot in a small time). They want to start a chemo pill but we are having problems with funding. Our co-pay is 1,200 a treatment. They are looking into charities and think we will qualify, but I want to start treatment. They think we need a round of 6 treatments, has any one else done the chemo pill?

cups368 said:

No we have not got another
No we have not got another opinion. We are going to the best place in Ohio The James and we did get the money to cover the price of the chemo pills. We are on the first week and things are going pretty good, next week will be the bad one. Thanks for responding

il6699 said:

I have also been diagnosed with Neuroendocrine carcinoma post liver surgery in Nov 04 (in Hong Kong) after 3 continuous years of monitoring. I had since received Octreotide scan and Endoscopic Ultrasound (espeically on the Pancreas since primary liver neuroendocrine carcinoma is rare). Both tests turned out negative. I am to do follow ups every 6 months with no additonal treatment. Does anyone with this prognosis?

Who out there could suggest me the best US hospital/surgeons to go to for 2nd opinions? Am I limited to just Mayo or M.D. Anderson ? Knowing this is a rare disease, I would trust someone best with the most experience dealing with it.

Hey Grand, are you receving additional treatments such as chemo? I have not been advised to do so.

Stay strong and healthy. This seems the best way to fight back.

Take care and wishing you speedy recovery.

For those who has seen this please help on the the US hospital question. Tks.

grand442003 said:

Hello Chrisaw; My name is Grand and I was diagnoised with Neuroendocrine Carcinoma in March 2001 and I was told by my doctor that I had 3 months to 5 years to live and I looked at my doctor and told him it was up to Dr. Jesus; I immediately started praying and I asked God for a healing; John 14; What ever you ask in His Name He Will Do It; The cancer is stable; I give all the Praise and Glory to God; I also asked God to send me to M.D. Anderson Cancer Center and God answered my prayers. M.D. Anderson Cancer Center is one of the best Cancer Center's in the world. I was on regular chemotherapy and now I get an injection every month. The injection is call Sandostatin Lar Depot. The cancer has'nt grown since i was diagnoised March 2001 and I give all the Praise and Glory to God. There's Nothing God Can't Do. All you need is faith as small as a mustard seed. Chrisaw if you ever need to talk please e-mail me at grand442003@aol.com; A Friend Forever Grand;

iggydesign said:

Neuroendocrine Carcinoma - Liver
I happened on this site and found that there are "a lot" of people here that have similar cancers and I wanted to know if I can get some additional info which others have discovered.

I am getting severly depressed with my diagnosis of this cancer. I am not getting answers from my current oncologist. Everytime I try to ask questions about my cancer, I am always getting neutral replies of "we need to watch and see what happens" or "we do not have enough information to really give you the answers you want". I have lost my job because I am unable to sit or stand for anymore than an hour at a time. Everytime I go into an interview I have to wear a head scarf because half of my head is bald and the other has 5 o' clock shadow. I was even told by a head hunter that I cannot wear my head scarf to interviews, even after I told them I was wearing it because I had radiation therapy and have half a head of hair.

I am 40 years of age and I have multiple neuroendocrine carcinomas in my body which include the liver, pancrease, spine and my skull. I was diagnosed about 7 months ago. I have gone through 2 round of chemo using 5FU and Streptososin. I also had 15 rounds of radiation for my skull. I was recently told by my oncologist that I need to see a specialist since the chemo will not work. I will be seeing a Dr. at the Moffitt Cancer Center in Tampa, FL on the 24th of March. While I was waiting for my visit, I had a recent bone scan which shows another tumor in my skull which has recently appeared in the last 2 months. The tumors in my liver have grown twice as large in the last 3 months and I have 3 tumors in my spine.

I wanted to know if anyone has had any treatments for this cancer and had no growth or decrease in growth or any of their tumors. I also wanted to know if anyone has a good site on the net about this type of cancer. Even more, are their any websites or communities that support this cancer.

I am not sure how this site takes email, but any replies to my message would be greatly appreciate to my personal email address of iggydesign @ hotmail . com as well as any posts to this site.

bz said:

tell more about your treatment
hi.....my sister has neuro endocrine cancer.....has had surgeries, liver transplant...and now it is back again....please tell me more...thank so much, bz