Poorly Differentiated Neuroendocrine Cancer

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Poorly Differentiated Neuroendocrine Cancer

by Randall_W on Wed Aug 10, 2005 12:00 AM

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There is VERY LITTLE information that I have been able to find about my "poorly differentiated neuroendocrine cancer" that does not originate from any organ, etc. It was an unbelievably fast-growing thing when it first showed up, surrounding my aorta and spine (grew from 3x5x8 cm at first scan to 8x10x15 cm at the next scan 20 days later!). While it IS responding well to the chemotherapy (Etoposide and Carboplatin every three weeks), I would like to have information about ANY specialist or specialty cancer center for this specific cancer. IT WOULD BE GREAT TO BE ABLE TO ACTUALLY TALK TO DOCTORS THAT DEAL WITH THIS TYPE OF CANCER REGULARLY! My doctor at Emory, Atlanta, GA, is wonderful, but he has not seen this before. Since this is, as I understand it, a systemic disease, I will have to continue treatments for a long time---and "who knows" the outcome. Thanks. R.W. Carrollton, GA

Neuroendocrine Tumor

by Nettie on Tue Nov 01, 2005 12:00 AM

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I also have a poorly differientated neuroendocrine tumor from an unknown primary that has spread to the liver. My tumor is 6x8 cm. How are your treatments going? Chemo so far has stabilized the tumor but it has not shrunk. I would love to have more information on studies.

Poorly Differentiated Neuroendocrine Cancer

by Randall_W on Thu Nov 03, 2005 12:00 AM

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I received a total of 8 3-day sessions (a session every three weeks); at the end of that time, my tumor (that had encircled the aorta and spine) had been eliminated---considered in remission. Last chemo was the first week in August---then it ROARED back all at once during the last week of September and first week of October. I was GREAT one day, then I was having a little back pain, then got violently ill---like a stomach virus. The tumor had grown back within just a few weeks to become huge again, pressing against the duodenum and causing a blockage between the stomach and small intestine. I was hospitalized, NEW chemo started (this time, Gemcitabine and Taxotare), a J-G feeding tube inserted into my abdomen. That is still in place, and I hopefully will get it removed in a few weeks (presuming that the chemo works as they hope it will). In the meantime, I continue to HUNT for information regarding this thing! Unless I learn something that changes my plans, I intend to go to CEDARS SINAI'S CARCINOID AND NEUROENDOCRINE CANCER CENTER in LA within the next month or so. That seems to be the only place that actually specializes in a this type of cancer. I did find a posting on the web from a doctor in Naples, Italy, that had successfully treated a 72 year-old lady with chemo, didn't shrink tumor, but DID stabilize it so that she was living a normal life with treatment. Who knows?! If you learn anything more, please share it with me. Thanks. Randall

Neuroendocrine Tumor

by Nettie on Fri Nov 04, 2005 12:00 AM

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Thanks for the info. I sure hope your treatments go well. It is scary how aggressive these tumors can be. I live in Orange County, Ca. Very close to LA. So I will be checking into the cedar center. Please keep me posted. So far I am doing well. Wish you the best of luck. Janette My email address is --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html --- Hope to hear from you soon.

RE: Poorly Differentiated Neuroendocrine Cancer

by Debnebraska on Wed Dec 27, 2006 12:00 AM

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On 8/10/2005 Randall W. wrote:

There is VERY LITTLE information that I have been able to find about my "poorly differentiated neuroendocrine cancer" that does not originate from any organ, etc. It was an unbelievably fast-growing thing when it first showed up, surrounding my aorta and spine (grew from 3x5x8 cm at first scan to 8x10x15 cm at the next scan 20 days later!). While it IS responding well to the chemotherapy (Etoposide and Carboplatin every three weeks), I would like to have information about ANY specialist or specialty cancer center for this specific cancer. IT WOULD BE GREAT TO BE ABLE TO ACTUALLY TALK TO DOCTORS THAT DEAL WITH THIS TYPE OF CANCER REGULARLY! My doctor at Emory, Atlanta, GA, is wonderful, but he has not seen this before. Since this is, as I understand it, a systemic disease, I will have to continue treatments for a long time---and "who knows" the outcome. Thanks. R.W. Carrollton, GA 
Hi Randall W.    My mother was diagnosed with poorly differentiated neuroendocrine cancer with unknown primary approx 3 years ago.    She recently sees a doctor in our home state of Nebraska for treatment.   We have run into the same problem with finding someone who specializes in her type of cancer since it is so rare.   Recently, we did find of a doctor at the University of Iowa in Iowa City, IA who has actually written a book on this type of cancer.   His name is Dr Thomas O'Dorisio.    His research and work on this type of cancer was done with several other specialists across the country.   You may want to do a search on the internet to see if you can find the book they wrote.   Dr O'Dorisio is actually an Endocrinologist but he consults with an oncologist when treating patients.  Because this type of cancer affects the hormonal systems in patients bodies he does a very thorough research on one's hormonal system to see if he can pinpoint which hormones are affected and whether or not he can pinpoint the primary based on one's symproms and the hormones being affected.   We did take my mother to see him and are awaiting his final analysis for his second opinion.     They are administering a drug called Sandostatin to patients that help with symptom control and cause the tumors to not grow.  There is also a treatment being done in Europe currently that they are hoping to have at The University of Iowa within the next year or so that will actually kill the tumors.       Good luck and his book is on the internet.       Deb.        

 

RE: Poorly Differentiated Neuroendocrine Cancer

by mercede508 on Sat Feb 02, 2008 12:00 AM

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My dad has neuroendocrine cancer also. It showed up on his head as little clustered lumps. He also had a tumor in his duodunum.Hse is being treated right now with etoposide and carboplatin. Next week he has an appointment at Sloane Kettering in NY.

RE: Poorly Differentiated Neuroendocrine Cancer

by mrskimmy on Sun Feb 03, 2008 12:00 AM

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On 2/2/2008 mercede508 wrote:

My dad has neuroendocrine cancer also. It showed up on his head as little clustered lumps. He also had a tumor in his duodunum.Hse is being treated right now with etoposide and carboplatin. Next week he has an appointment at Sloane Kettering in NY.


 

There are  clinical studies at Vanderbilt University in Memphis.  You should also check out Cedar Sinai in LA.  They have a huge Neuroendocrine building.  The Mayo Clinic, Dr. Joseph Rubin is fantastic and is well known for his treatments of this type of cancer.  Cisplatin is also a drug they use with etoposide.

Good luck and keep me posted. 

RE: Poorly Differentiated Neuroendocrine Cancer

by mercede508 on Tue Feb 05, 2008 12:00 AM

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On 2/3/2008 mrskimmy wrote:

 

On 2/2/2008 mercede508 wrote:

My dad has neuroendocrine cancer also. It showed up on his head as little clustered lumps. He also had a tumor in his duodunum.Hse is being treated right now with etoposide and carboplatin. Next week he has an appointment at Sloane Kettering in NY.


 

There are  clinical studies at Vanderbilt University in Memphis.  You should also check out Cedar Sinai in LA.  They have a huge Neuroendocrine building.  The Mayo Clinic, Dr. Joseph Rubin is fantastic and is well known for his treatments of this type of cancer.  Cisplatin is also a drug they use with etoposide.

Good luck and keep me posted. 


 

RE: Poorly Differentiated Neuroendocrine Cancer

by mercede508 on Tue Feb 05, 2008 12:00 AM

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Thanks for your reply. We are going to see what Sloane has to offer next week.  No one really gives us an answer about the growths on the scalp. The doctors that are treating him right now really don't give much information about this disease. Why weren't we offered Sandostatin? I read so much about that drug.

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