Poorly differentiated, high grade neuroendocrine carcinoma

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RE: Poorly differentiated, high grade neuroendocrine carcinoma

by Clbt102 on Mon Jul 14, 2014 03:29 AM

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That is great... Let me know what they say her mutations are.. I have learned an incredible amount in the last year or so... Maybe I can help Carrie

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by tchrist14 on Tue Jul 15, 2014 01:52 AM

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On Jul 14, 2014 3:29 AM Clbt102 wrote:

That is great... Let me know what they say her mutations are.. I have learned an incredible amount in the last year or so... Maybe I can help Carrie

There were 2 genetic alterations......TP53 which is common with most cancers and the other is EWSR1 for which they recommend Afinitor. Her Dr. put her on Afinitor 10mg.

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by Clbt102 on Tue Jul 15, 2014 02:04 AM

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I have there p53 gene as well, along with 4 others... There is a clinical trial at dana farber involving a drug called kevitrin.. This drug is showing great promise to restore mutated p53... I did afinitor.. Biggest side affect I had was mouth sores... I used a mouthwash from crest I think specifically for mouth sores... Used it 3 or 4 Times during the day as well as morning and evening... Kept the sores pretty mild... Not sure about the other mutation... What kind of cancer does ur wife specifically? Where is her primary? Carrie

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by tchrist14 on Tue Jul 15, 2014 03:00 AM

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On Jul 15, 2014 2:04 AM Clbt102 wrote:

I have there p53 gene as well, along with 4 others... There is a clinical trial at dana farber involving a drug called kevitrin.. This drug is showing great promise to restore mutated p53... I did afinitor.. Biggest side affect I had was mouth sores... I used a mouthwash from crest I think specifically for mouth sores... Used it 3 or 4 Times during the day as well as morning and evening... Kept the sores pretty mild... Not sure about the other mutation... What kind of cancer does ur wife specifically? Where is her primary? Carrie

Yea the clinical trial is in Boston. She has High Grade Neuroendocrine cancer with Low Differential stage 4. No primary.

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by Clbt102 on Tue Jul 15, 2014 05:16 AM

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I also had no primary... Just has a cancer molecular typing test done to try and find the primary... Came back with 96% certainty to be Merkel cell carcinoma... Finding out my primary opened doors for me regarding clinical trials... I would recommend your wife get this test done as well.. Carrie

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by tchrist14 on Tue Jul 15, 2014 01:34 PM

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On Jul 15, 2014 5:16 AM Clbt102 wrote:

I also had no primary... Just has a cancer molecular typing test done to try and find the primary... Came back with 96% certainty to be Merkel cell carcinoma... Finding out my primary opened doors for me regarding clinical trials... I would recommend your wife get this test done as well.. Carrie

She had it done last year in March and they couldn't determine the primary. She just got off a clinical trial after being on it for 11 months. only her and 1 other person in the country were on it for that long. We've been told by 3 Neuroendocrine doctors that with High Grade and Low Diff, the primary doesnt really matter. Thie testing at Foundation One suggested another trila she could be a candidate for but would have to travel to Boston to do the chemo. So...Afinitor it is. 

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by Clbt102 on Tue Jul 15, 2014 02:20 PM

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Yeah I was told by my dr that the primary didnt matter either... Was told by the dr at Sloan and Rutgers it did... Finding the primary opened a whole new category of clinical trials for me... I have high grade, pooy differentiated as well. Which med was ur wife on that held it at bay for eleven months? Carrie

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by tchrist14 on Tue Jul 15, 2014 03:43 PM

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On Jul 15, 2014 2:20 PM Clbt102 wrote:

Yeah I was told by my dr that the primary didnt matter either... Was told by the dr at Sloan and Rutgers it did... Finding the primary opened a whole new category of clinical trials for me... I have high grade, pooy differentiated as well. Which med was ur wife on that held it at bay for eleven months? Carrie

She did 6 rounds of carboplatin/Etoposide then was put on a clinical trial using Taxotere and a new nanoparticle delivery system.

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by Clbt102 on Tue Jul 15, 2014 04:01 PM

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I did cisplatin and etiposide... Cancer free for six months... Came back in a lymph node below my kidney... If u can... Try to find out where her primary is... When I get home I'll let u know who ran the cancer id test for me... Having that test ran may end up saving my life Carrie

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by tchrist14 on Tue Jul 15, 2014 05:26 PM

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On Jul 15, 2014 4:01 PM Clbt102 wrote:

I did cisplatin and etiposide... Cancer free for six months... Came back in a lymph node below my kidney... If u can... Try to find out where her primary is... When I get home I'll let u know who ran the cancer id test for me... Having that test ran may end up saving my life Carrie

Thank You! We have tried twice to find the primary and other than opening her up again and looking for it that way our options of finding the primary are out. It would not change her treatment at all regardless. She has 2 tumors in areas that cannot be removed. (Bladder and IVC in right pelvis area). Her treatment would be the same whether they found the primary or not. As far as they know, the GYN Oncologist may have removed the primary and not known that it was the primary. 

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