Poorly differentiated, high grade neuroendocrine carcinoma

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RE: Poorly differentiated, high grade neuroendocrine carcinoma

by ron1971 on Mon Dec 22, 2014 06:07 AM

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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. 

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by ron1971 on Mon Dec 22, 2014 06:24 AM

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https://clinicaltrials.gov/ct2/show/study/NCT02054806?term=mk3475+solid+tumor&rank=3&show_locs=Y#locn

You can click on the above link to see if there is a clinical trial with MK3475 close to your home

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by smallo on Sun Jan 04, 2015 05:12 AM

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Dear Carrie,

You are not alone with this cancer.  I was diagnosed in 2005. I have the octreotide scan yearly and CTscans every 4 months. I have been taking Afinitor for 3 years (5mg) I was just increased to 10mg.  I have had mets to the liver, peritoneum,lungs, spine and gut regions.  It is typically a surgical cancer.  I see the physicians at the Neuro Endocrine Tumor Program at LSU/Ochsner Medical in Kenner, Louisiana.  They specialize in Carcinoid.  Get in touch with them.  They treat patients from all over the country.

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by smallo on Sun Jan 04, 2015 05:18 AM

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I had mets to my liver and received Y90 treatment in Baton Rouge, Louisiana by Dr. Ryan Majoria.  Following the treatment all tumors in my liver were gone. That was in 2009.  I am applying now seeking Y90/L177 treatment in Switzerland as I am no longer a surgical candidate. I.e., mets to lungs, spine and original areas.  Right now there are several areas in the country which are conducting these trials, but they are blind trials.  You either get one or the other medication.  Closest to Louisiana right now is Tampa, FL.  Maybe this would be worth checking into.

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by tchrist14 on Sun Jan 04, 2015 07:36 PM

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My wife goes to The FCS in Ft. Myers. The trial is given at several locations in the country but I know at one time there was only my wife and 1 other Pt. in California still on it. She did it for 10 months.

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by lizdwan on Tue Mar 24, 2015 04:52 PM

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hi i have just joined this group (from Ireland).  This is the very first time I have read of anyone with the same diagnosis as my husband.  He was diagnosed with a left axillary secondary tumour last April.  It grew from grape size to 9cm in 3 weeks! He had an octreotide scan which showed a 2cm node in the left groin.  He was never sick and up til then never even visited a GP. It was >90% on the ki-67 index where usually neuroendocrine tumours are <15%.  The suspected origin is the lung. He had 6 sessions of carboplatin and etoposide and got good results. They shrank to 3cm and 1cm.  He then had radiotherapy to both sites.  He finished that 20 January and on 9th March had a CT scan.  It showed 3 new lesions on the liver which were not there in October.  We are heartbroken.  He looks great, is fit and has no illness.  Our consultant says chemo is the only option - but he can only have so much and then his body will not be able to continue.  Does anyone have any information re clinical trials , alternative drugs etc?

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by momsgirl1 on Thu Apr 30, 2015 07:53 PM

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Carrie,

My mom was diagnosed with Highrade poorly diff Nets as well last year we have gone through 1full round of carbo platin etopiside and a half they did a scan and decuieded to put her on PDL1 immunotheraoy . using nivo/ euro lab ... how are you doing and does this sound familiar ?

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by momsgirl1 on Thu Apr 30, 2015 07:55 PM

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If anyone has this cancer that is on a clinical trial please email me

trying to find some support from others ..

TY

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by mschange on Fri May 01, 2015 01:28 PM

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On Mar 24, 2015 4:52 PM lizdwan wrote:

hi i have just joined this group (from Ireland).  This is the very first time I have read of anyone with the same diagnosis as my husband.  He was diagnosed with a left axillary secondary tumour last April.  It grew from grape size to 9cm in 3 weeks! He had an octreotide scan which showed a 2cm node in the left groin.  He was never sick and up til then never even visited a GP. It was >90% on the ki-67 index where usually neuroendocrine tumours are <15%.  The suspected origin is the lung. He had 6 sessions of carboplatin and etoposide and got good results. They shrank to 3cm and 1cm.  He then had radiotherapy to both sites.  He finished that 20 January and on 9th March had a CT scan.  It showed 3 new lesions on the liver which were not there in October.  We are heartbroken.  He looks great, is fit and has no illness.  Our consultant says chemo is the only option - but he can only have so much and then his body will not be able to continue.  Does anyone have any information re clinical trials , alternative drugs etc?

I'm very sorry for the troubles your dad is experiencing.  Your support makes a lasting difference every single day.  

I would contact the Classical Chinese Medicine Society in the UK for more information on alternative ways to help with the cancer.  There are courses offered in a small town not far from Inverness, Scotland. This is where I went when I was first very ill from Stage 4 neuroendocrine. They have ways to help improve your energy levels and state of mind mentally and physically. You have to open to heal. http://www.classicalchinesemedicine.co.uk/

I have heard that chemo usually worsens the situation for neuroendocrine tumors. (I have been with the best neuroendocrine specialists in New York). Ask the doctors about CAPTEM, oral chemo in small dosages with less side effects and toxicity than regular chemo. I did the trial with Columbia University in New York and it along with studying qigong (chigong) in the UK vastly improved my state. 

For western clinical trials, try: http://www.caringforcarcinoid.org/. Then click the the tab 'Resources' and 'Clinical trials' on the dropdown menu.  

I am thinking of you and your dad.  Thanks so much for reaching out to this forum. I'm glad I found this message and hope it helps, even though it's a late reply. Please let me know if you need more help.  

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by momsgirl1 on Fri May 01, 2015 05:51 PM

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Hi Galo ... Hope all is we'll my mom is about to begin I was wondering how your wife is doing. .same dx as ur wife high grade small cell neuro Endo started ampular of vater mets to liver just wondering how she is doing on it . And how u are doing ????
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