Poorly differentiated, high grade neuroendocrine carcinoma

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RE: Poorly differentiated, high grade neuroendocrine carcinoma

by mandd1942 on Sun Aug 12, 2018 10:55 PM

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On Mar 18, 2018 12:38 AM tishy24 wrote:

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,


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?

I just found this website and message board and it reflects so much of what my husband has been going through.  We are at a new crossroad and I need the benefit of your experience.

In April of 2016 Don was diagnosed with high grade, poorly diferentiated NET with stomach origin. After chemo with carboplatin and etopocide and 30 days of traditional radiation, the tumors were gone. However, within 3 months, they reappeared in his liver.  Carboplatin and etopocide have been effective in killing the tumors or cancer cells that show for up to 3 months but they return and he has been through 4 more rounds of chemo and one round of cyberknife radiation.  The tumors have only reappeared in his liver so far.

He is being considered for a study at Mayo in MN but we have not heard if he qualifies. He has had his tumor tested for the markers but I don't know what his markers are.

His tumors are back and his Doc in St Paul and the Mayo NET specialist do not recommend that he go back to carboplatin and etopcide.  They have recommended 2 immunotherapy drugs -topokeetan and ironoteekan--that have shown to be affective against small cell lung cancers. 

Have any of you who have the PD/HG NET tried these drugs? If so, have they worked?

My husband is in his 70s and a snag we have encounted is that Topokeetan and Ironoteekan are not Medicare "approved" drugs so we would have to pay for them out of pocket--UNless the drug company decides to donate the drugs. Since Medicare does not cover them, his supplemental insurance doesn't cover either.

Does anyone know if the drugs that have been studied at Rutgers or other locations have been affective against PD/HG NETs?

Are there currently any studies going on for immunotherapy drugs or other drugs to fight PD/HG NETs? If so where?

Unless there is a magic drug out there that would forever eliminate the recurrance of these tumors, we presume sequential treatments will continue as our lifestyle. It would be nice to have a longer "remission" window than 3 months and a drug or preventative plan that is more affective. 

Thanks for any insights and recommendations. 

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by mandd1942 on Tue Aug 14, 2018 02:10 AM

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On Dec 22, 2014 6:07 AM ron1971 wrote:

Hi GaloD: My wife has high grade small cell neuroendocrine cancer with primary in the stomach and mets to liver. I could not find any trial specifically for this cancer at Sloan. We had a choice to start Taxol as second line defense or start an immunotherapy trial. She just started a PD-1 immunotheraphy trial at Rutgers in NJ with MK3475 (Pembrolizumab). I would strongly advise you to call Rutgers at 732 235 8780 and see if your dad can enroll in this trial. 

I know you posted this 4 years ago but can you tell me the outcome of your wife's treatment with the PD-1?  

My husband has the exact NET as your wife. Has been on chemo (carboplatin & etopocide) for 2.5 years and now needs to move to immunotherapy.  

Immunotherapy infusion of Opdivo & Yervoy have been prescribed.  

Was the PD-1 effective?  Was it approved?  We are having trouble finding treatments.  We are working with both an oncologist and a NET Specialist at the Mayo Clinic

Thanks for any insights you can provide


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