Neuroendocrine Carcinoma

Mary B said:

Neuroendocrine Carcinoma colon any advice on drs in SoCal
My sister was diagnosed yesterday with Neuroendocrine Carcinoma found in the colon and we are trying to hit the ground running on where she should go. We live in Southern California and at first thought UCLA, then a friend has really recommended USC Norris Center with Doctors Josef Lenz and Dr. Robert W. Beart. Has anyone had any experience with these doctors or UCLA?
My sister is the heart and soul of our large family and we are going to fight for every extra day she can get, and we know that it often starts with the right medical team. Any ideas would be so appreciated.

Theonlylucky1 said:

Newly Diagnosed
My partner Joseph was just diagnosed with Poorly diff high grade neuroendocrine CA (small cell CA0, anorectal area) With multiple hyopdensities throughout the liver and was giving 6 months to a year live and maybe 5 years with chemo. We are headed to Seattle Cancer Care Allince on May 2 for our second opinion. If anyone can help with this please email me. Johnsonsdragon1@yahoo.com

Theres not much research out there for this type of cancer.

Thanks so much for any help.
Robert

lawelle said:

University of Chicago
Hello Lauren,
My name is Lisa my younger brother, he will be 31 this month, was recently diagnosed with neuroendocrine carcinom and is starting his third round of chemo tomorrow, etoposide and cisplatin. We have seen two doctors at Edwards Hospital in Naperville, IL and need to find other places to get additional opinions. He was given 6 months to 2 years. Who have you seen at University of Chicago and what have been the results. I hope your son is doing well. I too am praying everyday.

katbalou said:

neuroendocrine breast cancer
I'm new to this web site. Just found your comments. Wonder how your Mom is now. 5 years ago I was diagnosed with small neuroendocrine cancer, primary site in the breast. I had modified radical mastectomy, cisplatin/etoposide and then radiation. I am alive and well and cancer free. I was told I was going to die. Obviously I did not die. I think they are finding that the breast is less vascular so the cancer does not spread as readily as from other cites.

maynard said:

Not alone
I was diagnosed 12/22 with NEC of the colon, multiple liver sites, lympodes, and both lungs. I was doing fine one day and my side hurting the next and unable to breathe. i don't know what to tell you. They gave me maybe 4 months w/o treatment and 8 with. According to Jackson doctor, it is inoperatable and incurable. My is fast acting large cell cyokeratin 8/18. I am going to Vanderbilt this week and trying to get into M D Anderson.It is up to our Lord God to decide when it is mine time.

Theonlylucky1 said:

Newly Diagnosed
My partner Joseph was just diagnosed with Poorly diff high grade neuroendocrine CA (small cell CA0, anorectal area) With multiple hyopdensities throughout the liver and was giving 6 months to a year live and maybe 5 years with chemo. We are headed to Seattle Cancer Care Allince on May 2 for our second opinion. If anyone can help with this please email me. Johnsonsdragon1@yahoo.com

Theres not much research out there for this type of cancer.

Thanks so much for any help.
Robert

BellaSusie said:

carcinoid new
Just found out recently that I have a carcinoid in my face. I'm really new to all this! I'm not sure how this site works either. The area where I live played with my life since Feb of this year. Then I went to what I thought was the best cancer center in this area, boy was I fooled. If everyone will just bear with me while I learn how to work this site.

sinkorswim said:

Metastatic Neuroendocrine Carcinoma
Hi Monawolf,

I know it's six years later since you've posted but I just recently found the ACS survivor network webpage. I was originally diagnosed on my 18th birthday in Dec of 2003, my primary tumor was in the Thymus. I went through Cisplatin and VP-16 chemotherapy for a few months and then had my first surgery. A year went by and it spread to the surrounding ribs and lymph nodes so I had a second surgery. Then I did radiation in the chest from Oct-Dec of 2005. My local oncologist gave up on me and sent me home to get 'comfortable'. Luckily a neighbor works in cancer research and hooked me up with Dr. James Yao a Carcinoid specialist at MD Anderson Cancer Center in Houston, Tx. We watched for a year and as it spread to lungs and diaghram I began oral chemotherapy with Temodar. I took it for a year and everything remained stable. Then in December of 2010 I had a sinus surgery and the surgeon found a mass in my nasal passage. We did a head MRI and found a large tumor at the base of the skull that spread to the sinuses as well. I moved to Houston in Oct of 2010 and did Proton Therapy. All the tumors below the neck: lungs, diaghram, ribs, hips and spine had been stable since 2007 till this August I began having pain, numbness and tingling down my right arm. We found a small new tumor near my cervical spine so I just started radiation again. I was put back on Temodar as of this February. The tumor was able to grow while on the chemo so they've decided that I'm no longer responsive. My doctor is trying to get me approved for Avastin and I've tried Affinitor but got really sick from it.

Where has your dx taken you? Anyone else have more information on treatment options? I was just told about the genetic profiling testing.

Thanks so much!
Meghan

benhaynes92 said:

Hi Chris, not sure if you
Hi Chris, not sure if you are still using this blog.

My name is Ben Haynes and I am from Nottingham in the UK. Two years ago my Mum was diagnosed with Neuroendocrine cancer. I am still learning all what I can about this particular cancer and it is so hard to keep up with the consultants who are consistently telling you different things. As I understand it, it is a hormonal cancer, however she had a slow growing tumor in her large bowel that was removed in 2009. The bowel was removed successfully and replaced by a colostomy bag.

My Mum is currently having Lanreotide treating so as to stop the cancer from growing any more. This seemed to have worked for some time but we have just been told that a second tumor is growing in the liver. She is on the highest dosage of the Lanreotide and she takes the injection every 3 weeks.

She has also been carrying an infection that developed from her first operation (removing the bowel) and the doctors are now saying that they are unable to operate in fear that the infection will grow and spread. She is also very thin and wouldn't be able to tolerate another operation. The consultant also said the Chemo would not be an option as her immune system is not strong enough.

Its so far been a very strange journey and I can't even begin to understand how my Mum is feeling, or anyone else suffering with cancer for that matter. I am 19 and currently doing my degree in music performance whilst doing my best to stand by my Mum.

GJ100 said:

Neuroendocrine tumor
Hi Jeffrey,

My husband was diagnosed with a neuroendocrine tumor in September 2010. They have not been able to ascertain the site of the primary tumor but there are considerable METS in his liver. He has been taking Sandostatin injections which were, initially, effective in controlling the diarrhea that is associated with this disease. But, after 14 months, during which time both the dosage and the frequency of administration were increased the diarrhea has returned. As a result of your post we are going to look into the possibility of including Afinitor in his regimen. Thanks!

GJ