Poorly Differentiated Neuroendocrine Cancer

This is my first time posting on here so I'll give the whole story and hopefully someone will respond with some good ideas or information.

I took my 31 year old wife to the ER Dec. of 2008 she was having right side abdominal pain.  After several tests and 6 days in the hosptial they found she had spots on the right side of her liver and ordered a needle biopsy.  We received a phone call from our Dr. on Dec. 26th saying she had adenocarcinoma that probably originated in the colon.  In Jan. 09 she had a colonoscopy which revealed the tumor about 3/4 way down her colon.  By that time we had an appointment in St. Louis at Barnes Wash U with a Liver surgeon to look at the possiblity of a liver/colon resection.  A day before our appointment at Wash/u the path came back from the colon stating the tumor was a small cell carcinoma.  Slides and tissue blocks were sent to the path department at Barnes and they determined she had a poorly differentiated high grade neuroendocrine carcinoma.  We saw a specialist at barnes and he started her on a regimen of carboplatin and etopiside.  After six weeks of treatment she had a CT which showed very little tumor shrinkage (tumor is too large in liver and too close to artery to resect).  We continued with the regimen and had another CT six weeks later which showed about 1cm of growth.  We got the impression that the oncologist at barnes had kind of given up on us so we were referred to Mayo clinic in rochester by our local oncologist. Mayo also did a path and agreed with the poorly diff. neuro.  Mayo suggested a regimen called folfoxiri which is a combo of 5fu, irronotecan and oxalaplatin.  After six weeks of this treatment (rough treatment)  no growth no shrinkage.  Our next step is to add avastin in with the current regimen. 

 I've read some replies about sutent.  Is this more promising than avastin? Has it been used on Neuro tumors.  This tumor doesn't express hormones or blood markers like other cancers.  Several Dr.s that have seen the path reports say that this is a very aggressive cancer because when they look at it under a microscope it is very vascular.  That is why I'm hoping the avastin will work.  I think it looks more aggressive under a micrscope than it actually is biologically in her body.

 Has anyone heard of genotyping being performed on NET's?

Does anyone have experience with RAD001 with NET's?

On 6/13/2009 audiomagic wrote:

This is my first time posting on here so I'll give the whole story and hopefully someone will respond with some good ideas or information.

I took my 31 year old wife to the ER Dec. of 2008 she was having right side abdominal pain.  After several tests and 6 days in the hosptial they found she had spots on the right side of her liver and ordered a needle biopsy.  We received a phone call from our Dr. on Dec. 26th saying she had adenocarcinoma that probably originated in the colon.  In Jan. 09 she had a colonoscopy which revealed the tumor about 3/4 way down her colon.  By that time we had an appointment in St. Louis at Barnes Wash U with a Liver surgeon to look at the possiblity of a liver/colon resection.  A day before our appointment at Wash/u the path came back from the colon stating the tumor was a small cell carcinoma.  Slides and tissue blocks were sent to the path department at Barnes and they determined she had a poorly differentiated high grade neuroendocrine carcinoma.  We saw a specialist at barnes and he started her on a regimen of carboplatin and etopiside.  After six weeks of treatment she had a CT which showed very little tumor shrinkage (tumor is too large in liver and too close to artery to resect).  We continued with the regimen and had another CT six weeks later which showed about 1cm of growth.  We got the impression that the oncologist at barnes had kind of given up on us so we were referred to Mayo clinic in rochester by our local oncologist. Mayo also did a path and agreed with the poorly diff. neuro.  Mayo suggested a regimen called folfoxiri which is a combo of 5fu, irronotecan and oxalaplatin.  After six weeks of this treatment (rough treatment)  no growth no shrinkage.  Our next step is to add avastin in with the current regimen. 

 I've read some replies about sutent.  Is this more promising than avastin? Has it been used on Neuro tumors.  This tumor doesn't express hormones or blood markers like other cancers.  Several Dr.s that have seen the path reports say that this is a very aggressive cancer because when they look at it under a microscope it is very vascular.  That is why I'm hoping the avastin will work.  I think it looks more aggressive under a micrscope than it actually is biologically in her body.

 Has anyone heard of genotyping being performed on NET's?

 

Does anyone have experience with RAD001 with NET's?

Hello. I read your message. you are the first person that has a similiar situation to myself. I am 31 years old also. Back in Feburary I was diagnosed with neuroendocrine tumor ( poorly differentiated) . I had the spots on my liver, lungs, left breast, left kidney, This was all diagnosed from a liver biopsy. then i had a sigmoidoscopy. they took a biopsy which showed that I also had adrenocarcinoma coming from the colon. So we did 4 cycles of carboplatin and eptoside. My body did respond to the neuroendocrine tumors, but where the adrenocarcinoma in my colon did not respond. also i had 2 tumors ( the bigger ones on my liver that did not respond) . My team wanted then to do surgery to remove where the tumor was in my colon. I just had that done last monday. Now i am recovering from that. my surgeon did mention to me though that he thought instead of me having 2 cancers, he thinks i have rectal cancer with 2 cell lines. meaning...the cancer originated from my colon/rectum area and as it metastasized it eventually becamse more poor differentiation and some stayed together and did not differentiate. So now in a about a month we will treat my liver where the carboplatin /eptoside did not respond with adrenocarcinoma agents such as 5fu and oxplatin? Hopefully if there is shrinkage with that when i will be able to have my liver resected. did your wife have the colon resected? how big is the tumor on the liver that they can not resect currently? i also wanted to let you know that i drank this tea called vitely tea which helped me a great deal with nausea , energy and relaxing my stomach. if you wanted to email me directly ...let me know. looks like your wife and me have a lot in common.

lili