Poorly differentiated, high grade neuroendocrine carcinoma

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RE: Poorly differentiated, high grade neuroendocrine carcinoma

by Clbt102 on Tue Jul 15, 2014 05:39 PM

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I have a tumor in the lymph node right by my ivc! Carrie

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by tchrist14 on Tue Jul 15, 2014 06:34 PM

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On Jul 15, 2014 5:39 PM Clbt102 wrote:

I have a tumor in the lymph node right by my ivc! Carrie

Wow...small world! My wife's is attached to the vascalature in that area and the other bigger tumor attached to her bladder. She has had mets all over but was resolved. The most recent mets they found a few weeks ago are in her right lung. 

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by Clbt102 on Tue Jul 15, 2014 06:44 PM

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Is she having any leg aches or pain? I am .. And I'm wondering if the tumor is interfering with blood flow from the ivc to my legs.. Carrie

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by tchrist14 on Tue Jul 15, 2014 07:12 PM

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On Jul 15, 2014 6:44 PM Clbt102 wrote:

Is she having any leg aches or pain? I am .. And I'm wondering if the tumor is interfering with blood flow from the ivc to my legs.. Carrie

She has swelling in her right leg from a blood clot. It almost killed her during surgery and she is on levonox every day for it. She has pain and spasms in her sacral area due to a fractured sacrum from metastisis to the bone in that area. She takes Gabapentin and pain meds for it.

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by Clbt102 on Wed Jul 16, 2014 02:53 PM

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The name of the company that found my primary is "biotheranostics" The phone number is 888-370-7661 Www.biotheranostics.com Keep me posted Carrie

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by tchrist14 on Thu Sep 04, 2014 02:39 AM

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Just to update....my wife is still on the Afinitor. Having the first CAT scan since she started taking it in 2 weeks so we will see how it's doing. She also started a bone strengthning shot called XGEVA that she will get once a month. 

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by Clbt102 on Thu Sep 04, 2014 03:08 AM

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I am in a pdl1 trial at rutgers cancer institute... My tumors have been stable for eight weeks.. Which is incredible.. They have been growing like crazy. I just had my scans and het the results tomorrow. My dr at rutgers is very hopeful that this pdl1 drug will cure me.. They are having incredible results with it... :) Carrie

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by akdixon5 on Thu Oct 16, 2014 03:24 AM

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Push for the Octrecide scan. It will light up any spots of the cancer and make decisions about treatment easier. See a specialist for this cancer. It must be removed and then shots taken to prevent recurrence or progression. Extensive blood labs should be done.

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by ron1971 on Wed Nov 12, 2014 04:13 AM

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My wife was diagnosed with poorly differentiated (high grade) small cell neuroendocrine cancer in May 2014. Her primary tumor is in the stomach with metastasis to liver.  She finished a total of 6 cycle of chemotherapy with Carboplatin and Etoposide and had a partial remission. Her most recent scan shows the tumor growing back. Which trials worked for you? We live in NJ close to Rutgers? Looking into possible trials with taxol and PLX3397, how did this trial work for you?  Also looking into any immunotherapy trials for her. our son is 2 years only..

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by Clbt102 on Wed Nov 12, 2014 02:43 PM

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I have to make this quick due to driving lol.. Plx3397 did not work for me... I am in a trial with a drug called PDL-1... They determined that I have a cancer called Merkel cell carcinoma... This trial is specific to my cancer... But there are other trials with PDL-1... If you can get into a pd-1 or PDL-1 trial... These two drugs are going to revolutionize cancer treatment... I went from being terminal in June to being cancer free today... After three treatments, all 5 of my tumors are gone!! They are having phenomenal results with these two drugs... The immunotherapy guru at Rutgers is dr Howard Kaufman... He is president of the mungo therapy association if America... Call his office asap.. Make an apt... Before u do plx3397...it may save ur wife's life My email is Good luck Carrie

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