Poorly differentiated, high grade neuroendocrine carcinoma

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RE: Poorly differentiated, high grade neuroendocrine carcinoma

by futuremd91 on Thu Dec 04, 2014 06:45 PM

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On Jul 15, 2014 3:43 PM tchrist14 wrote:

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.

I was wondering where they were doing the clinical trial for the taxotere with the nanoparticle delivery system. It caught my eye and im very interested in doing a little bit more research on it.

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by Clbt102 on Thu Dec 04, 2014 07:15 PM

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I am doing a trial with PDL-1 and after three treatments every tumor is gone! I have no information on the trial you are asking about... Get onto clinicaltrials.gov and see if its listed in there.. Carrie

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by PARFOUR on Fri Dec 05, 2014 12:57 AM

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The tumors going away sounds like something we all are looking for.  Have the symptoms of carcinoid syndrome gone away also ?

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by Clbt102 on Fri Dec 05, 2014 02:44 AM

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I do not have carcinoid.. i have high grade, poorly differentiated carcinoma.. I have recently found out that what I actually have is Merkel Cell Carcinoma. I would highly recommend that if you can get into a PD-1 or PDL-1  trial.. you need to grab that up quick..

good luck

carrie 

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by GaloD on Fri Dec 05, 2014 09:01 PM

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Hi,

My dad has a gastric high grade pporly diffeentiated neueroendocrine carcinoma that metastacized to his liver and lungs.   The UCSF oncologist here is saying there are no clinical trial or any other options for him, short of trying another several cycles of cisplatin/etoposide.       Have you investigated the use of PD -L1 for your wife any further?   His tumors are rapidly growing now with maybe less than 3 months to live. Anyone is aware of any other options/trials?

 

Thank you!

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by ron1971 on Fri Dec 05, 2014 09:20 PM

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We are looking into a PD1/PD-L1 trial for my wife. You should also explore and see if your dad can be get into one. You can search in clinicaltrials.gov and see if you have anything close to where you live. Also you can call Merck and see if there is any trials they can refer your dad to.

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by mschange on Thu Dec 11, 2014 02:01 PM

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On Dec 05, 2014 9:01 PM GaloD wrote:

Hi,

My dad has a gastric high grade pporly diffeentiated neueroendocrine carcinoma that metastacized to his liver and lungs.   The UCSF oncologist here is saying there are no clinical trial or any other options for him, short of trying another several cycles of cisplatin/etoposide.       Have you investigated the use of PD -L1 for your wife any further?   His tumors are rapidly growing now with maybe less than 3 months to live. Anyone is aware of any other options/trials?

 

Thank you!

Dear GaloD, 

I sincerely believe that there is hope for your father and certainly more options to be explored.  This is after my experience with Stage 4 neuroendocrine carcinoid cancer at the age of 34 (now 35).  After confirmation of the diagnosis in Dec 2013, I decided to do a hybrid of both western and eastern treatment in January this year.  In NY, I was on a clinical trial with Columbia University on the CAPTEM program, where I received oral chemotherapy of two kinds in very low dosages, with very low grade side effects compared to regular chemo, which I didn't qualify for anyhow.  That same month, I flew to Forres, Scotland to learn qigong and Guolin walking for the first time.  No Chinese herbs, acupuncture, or nothing, just learning to integrate mind, body and spirit and doing exercises everyday.  After week 1, my energy soared! Mind you, I had already lost about 30 lbs and had very little muscle to work with.  My scans in February revealed tremendous shrinkage of about 40%- Top 1% in my clinical trial.  I'm almost at my one year point and my tumors have shrunk more than 60%.  Still aiming for remission by 2015.  What I'm trying to say is that there is hope beyond conventional therapies too.   Please let me know if you have questions about either therapt.  

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by GaloD on Sat Dec 20, 2014 03:59 AM

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Dear MsChange, 

Thank you for your response which I just somehow saw - new to the blog so probably were not looking in the right place before.  It is great to hear your story. Yes, any advice you can provide on either conventional or non-traditional therapy would be greatly appreciated.    My dad feels quite weak & probably cannot travel too far though.  


Thank you again

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by sephyrob on Sun Dec 21, 2014 11:43 AM

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My husband had this. Please go to Memorial Sloan. There is a CTrial for Poorly Differentiated Large Cell Neuroendocrine Carcinoma. My husband fought it and did not survive. The drs think that the radiation killed his healthy cells. After research upon research. We think that we should've gone forth with the clinical versus the radiation. You never know if your making the right choice with these things but I wish we could've done the clinical trial first. The clinicAl trial is in phase 2. Best if luck to you. This is a rare disease if cancer and it seems as though our loved ones got the worst form. NETs can or fir the most part slow growing. The LCell is the very aggressive type and mind blowing. Please get on the clinical trials. Radiation is no good fir tumors like these.

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by GaloD on Mon Dec 22, 2014 03:25 AM

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o Yes, I also suspect radiation made things worse. Not sure why UCSF/doctors  advised my dad to do it.   I will call Memorial Sloan first thing tomorrow morning.       My dad's is high grade small cell though.  Thank you for your email. It helps.  And I am so sorry to hear about your husband.

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