Poorly differentiated, high grade neuroendocrine carcinoma

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RE: Poorly differentiated, high grade neuroendocrine carcinoma

by salsagirl02 on Sun Jul 31, 2016 04:28 AM

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On Dec 27, 2015 4:02 PM Clbt102 wrote:

PDL-1 is going into trials for neuroendocrine carcinoma soon... maybe even now...   but, you can get into trials for solid tumors.. it doesnt have to be specific to neuroendocrine carcinoma... go to ClinicalTrial.gov "" target="_blank" rel="nofollow">http://ClinicalTrial.gov " target="_blank" rel="nofollow">ClinicalTrial.gov   

and type in PDL-1 and solid tumors   

or you can type in PD-1 and solid tumors  

this will give you a list of sites that are offering trials for people with solid tumors.   PD-1 and/or PDL-1 drugs are the best chance for people with neuroendocrine tumors.     

take care

carrie 

Thank you for the contact.  My husband has been diagnosed with High grade poor differential neuroendocrine carcinoma in the pancreas and now its spread to liver.  He is in pain and has no energy.  He is currently on chemo treatment.  Has anyone ever heard of anyone killing these types tumors with immunotherapy or hyperthermia?

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by deb777 on Thu Aug 04, 2016 04:33 PM

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Where did his cancer originate? My husband had pancreatic neuroendocrine carcinoma - high grade, poorly differentiated. Docs gave him 3-6 months to live. Cisplatin and Etoposide chemo killed it ALL. He has been cancer free for over 2 years. There is no evidence of cancer at all - even a biopsy of some scar tissue came back benign. THERE IS HOPE. 

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by deb777 on Thu Aug 04, 2016 04:34 PM

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Sorry - I reread your message again - they both had it originate in the pancreas. My husband's cancer also metastasized to his liver - in fact, the lesions on his liver were multiplying so fast, he had to have emergency chemo. 

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by kk3333 on Wed Aug 17, 2016 01:31 PM

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Hi, 

I finish my six cycles of the usual chemotheapy in May . My high grade tumor was in the breast and just started in the liver and bone. Yesterday my docter told me he had all good news, but with a rare diease you can not predict furture outcom.  I have limited funds and not access the highly regarded doctors suggested by the other posts. I don't know what to do. Please advice.

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by kk3333 on Sat Aug 20, 2016 12:31 PM

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On Aug 04, 2016 4:33 PM deb777 wrote:

Where did his cancer originate? My husband had pancreatic neuroendocrine carcinoma - high grade, poorly differentiated. Docs gave him 3-6 months to live. Cisplatin and Etoposide chemo killed it ALL. He has been cancer free for over 2 years. There is no evidence of cancer at all - even a biopsy of some scar tissue came back benign. THERE IS HOPE. 

I had neuroendocine carcinoma in my breast that just started in the liver and bone (very small amount). Scans show  it is 99% gone due to the Cisplatin and Etoposide. The plan now is to have scans done every 2 months.  I am wondering if there is anything else I could.  My hope is small. Please advise.

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by deb777 on Wed Aug 24, 2016 08:09 PM

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Please don't lose hope. You had an amazing outcome. Keep monitoring. And with every day that you're okay, researchers/doctors are coming up with new ways to treat cancer. Anything is possible. 

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by Seahawks07 on Tue Aug 30, 2016 01:00 AM

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On Jul 31, 2016 4:28 AM salsagirl02 wrote:

On Dec 27, 2015 4:02 PM Clbt102 wrote:

PDL-1 is going into trials for neuroendocrine carcinoma soon... maybe even now...   but, you can get into trials for solid tumors.. it doesnt have to be specific to neuroendocrine carcinoma... go to ClinicalTrial.gov " target="_blank" rel="nofollow">ClinicalTrial.gov " target="_blank" rel="nofollow">ClinicalTrial.gov " target="_blank" rel="nofollow">ClinicalTrial.gov "" target="_blank" rel="nofollow">http://ClinicalTrial.gov " target="_blank" rel="nofollow">ClinicalTrial.gov " target="_blank" rel="nofollow">ClinicalTrial.gov " target="_blank" rel="nofollow">ClinicalTrial.gov " " target="_blank" rel="nofollow">ClinicalTrial.gov " target="_blank" rel="nofollow">ClinicalTrial.gov " target="_blank" rel="nofollow">ClinicalTrial.gov " target="_blank" rel="nofollow">ClinicalTrial.gov "" target="_blank" rel="nofollow">http://ClinicalTrial.gov " target="_blank" rel="nofollow">ClinicalTrial.gov " target="_blank" rel="nofollow">ClinicalTrial.gov " target="_blank" rel="nofollow">ClinicalTrial.gov 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target="_blank" rel="nofollow">http://ClinicalTrial.gov " target="_blank" rel="nofollow">ClinicalTrial.gov " target="_blank" rel="nofollow">ClinicalTrial.gov " target="_blank" rel="nofollow">ClinicalTrial.gov " " target="_blank" rel="nofollow">ClinicalTrial.gov " target="_blank" rel="nofollow">ClinicalTrial.gov " target="_blank" rel="nofollow">ClinicalTrial.gov " target="_blank" rel="nofollow">ClinicalTrial.gov "" target="_blank" rel="nofollow">http://ClinicalTrial.gov " target="_blank" rel="nofollow">ClinicalTrial.gov " target="_blank" rel="nofollow">ClinicalTrial.gov " target="_blank" rel="nofollow">ClinicalTrial.gov " target="_blank" rel="nofollow">ClinicalTrial.gov " target="_blank" rel="nofollow">ClinicalTrial.gov " target="_blank" rel="nofollow">ClinicalTrial.gov " target="_blank" rel="nofollow">ClinicalTrial.gov   

and type in PDL-1 and solid tumors   

or you can type in PD-1 and solid tumors  

this will give you a list of sites that are offering trials for people with solid tumors.   PD-1 and/or PDL-1 drugs are the best chance for people with neuroendocrine tumors.     

take care

carrie 

Thank you for the contact.  My husband has been diagnosed with High grade poor differential neuroendocrine carcinoma in the pancreas and now its spread to liver.  He is in pain and has no energy.  He is currently on chemo treatment.  Has anyone ever heard of anyone killing these types tumors with immunotherapy or hyperthermia?

My husband was diagnosed with high grade poorly differentiated neuroendocrine carcinoma in his colon metastasized to his liver and lymph nodes. He had 70% tumor shrinkage with cisplatin and etoposide after 8 months. Then the oncologist wanted to do a three month break (ended up being two  months because i insisted on getting a scan) that lead to my husband's resistance to the chemo. So they've tried giving him ironotecan and that hasn't worked either. He has had two rounds now of the immunotherapy drug, keytruda even though he does not have the PD-L1 protein. They said there was a 20-30% chance it would work. So far my husband's left supraclavicular lymph node has enlarged so much that we don't think the keytruda is working. Also my husband was walking fine before the celiac plexus neurolysis (destroying nerves to block pain) but it has created so much problems. My husband has lower extremity weakness literally right after the procedure and can no longer walk on his own since that procedure. Please be careful in the next steps of treatment or even pain management. We are waiting for the rova-t clinical trial to open but can no longer wait. We are seeing Dr. Edward Wolin in NY next month and we are trying to get on Dr. Diane Reidy Lagune's schedule too if possible. I am trying my best to stay strong. It's been heartbreaking to see my husband go through this. 

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by tishy on Thu Mar 01, 2018 02:18 AM

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Glade everyone tolerated Cis/Etoposide

My sister got very sick after only 1 round of this

drug combo.  She was even rather critical. She got

better and the Dr. says he will give her no more, and that

she is platinum intolerant.  This had been over 2 months now.  He offered her PD-1 and she had very mild sickness from this or Opdivo.  However he said her liver tumors had grown in the two months time.  She was released from the hospital and hardly eats anything and spits up a bit.  She obviosly does not want this Dr. but has become emotionally overwhelmed and is doing nothing for herself.  Yes she has underlying emotional problems, but I don't know what to do.  These posts encourage me that one can try different things out there if you can find a good dr.  Watching her get weak and not eat makes me feel like we are running out of time.  Also the Oncoligist who we don't like also did no testing on the PD-1 to find if it would help.  Is this necessary, does anyone know?  He said the PD-1 has only 20% chance of helping her NET tumor and the spead around her liver.  She seems so incompetant to help herself and I wonder if I should go to the courts and take charge before it is too late. 

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by Seahawks07 on Thu Mar 01, 2018 02:37 AM

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You should get a health directive and advocate for her. Look into Rova-t or  Car T or any clinical trial you can get into that's for neuroendocine tumors. Depending if she has low grade or high grade NETS. Get a second opinion from Dr. Eric Liu at Rocky Mountain Cancer center, or next doctors at Memorial Sloan Kettering, or Einstein Medical in NY Dr  Wolin. I would also suggest looking into medicinal marijuana/cannabis oil. 

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by tishy24 on Sun Mar 18, 2018 12:38 AM

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On Feb 12, 2016 8:47 PM Clbt102 wrote:

I was stage IV, terminal with Merkel Cell Carcinoma (it was originally diagnosed as Neuroendocrine Carcinoma with unknown primary (high grade and poorly differentiated). I went through several different protocols of chemo.. nothing worked. I ended up in a clinial trial with a PDL-1 drug (now named Avelumab) and after three treatments all of my tumors went away. I have been cancer free for 18 months. 

good luck,

carrie 

Just saw your post and how are you doing now?

My sister has dx HG NET w/ spread around her liver.

She has started Opdivo PD-1.  They did not do any testing so far, as the FDA does not require they do.  I hope this works

for she is rather sick.  She is still losing weight and I worry as she spits up her food a bit.  Some days ok, but I am worried.  Does anyone has this problem?  Is this a result or what happens with liver tumors?

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