Poorly differentiated, high grade neuroendocrine carcinoma

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Poorly differentiated, high grade neuroendocrine carcinoma

by Clbt102 on Wed Mar 19, 2014 08:57 PM

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I am wondering if anyone has heard of a case like mine. I originally started out with single lymph node axillary involvement with unknown primary. Six rounds of platinum based chemo and a lymphadectomy later i was cancer free for four months. Just had my bimonthly scans and i have a new 1.0 cm lymph node below my kidney that is neuroendocrine carcinoma poorly differentiated. I had genotype testing done at "Foundation One". I have 5 genetic mutations, two of them are reactive to Afinitor. So now I am taking Afinitor. Dr wants to put me on afinitor long term. She is telling me that there is no chance for a cure. She is telling me that afinitor may suppress any tumor growth in the future, and that i will be on afinitor the rest of my life. They still have not found my primary spot. Anyone else have a case like mine? Has anyone else had poorly differentiated, high grade NET and done some other treatment? Has anyone with PDNET had any other scan besides CT/PET.. maybe an octreoscan or a Gallium 68? I am feeling like I am the only one in this country that has this cancer! Carrie

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by aus6321 on Mon Apr 14, 2014 05:38 AM

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You're not the only one in the country with this cancer.  If you are dealing with a poorly differentiated tumor, maybe you can see if there's a treatment option in PRRT. http://prrtinfo.org/

The octreotide scan can give the oncologist some insight on whether or not you are a good candidate for PRRT.  The gallium (DOTATATE) scan can show the tumor more clearly than an octreo-scan, however, it is not yet available everywhere in the US. 

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by sephyrob on Wed Apr 23, 2014 04:36 AM

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No you're not the only one. My husband is fighting both NEC and Adenocarcinoma on his liver that metastasized from his colon. Looking into prrt treatment. Go to http://www.heartlandcarcinoids.org/treatment_options/prrt_in And there is a list of US doctors that do this. calling the dr. In Houston. Forwarding all my husbands paperwork. Hopefully we can fight this thing.

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by LorrieS on Wed Jun 04, 2014 07:45 PM

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Hi Carrie,

I'm sorry to hear about what you're going through. I'm a survivor of a cancerous carcinoid tumor in the appendix. I thank the Lord every day. Don't give up, and I would suggest you get to a Neuroendocrine Specialist. Mine is Dr. Woltering in Kenneer, LA. (New Orleans). There are quite a few specialists in the US that deal with this rare type of cancer. It's treatment is usually a lot different than the conventional types of cancer. If your primary tumor can be found (Octreoscan) and removed that would be a huge step.Main things- get to a Neuroendocrine specialist with your records, and don't give up. 

Prayers for you,

Lorrie

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by JeremyHinton on Thu Jun 26, 2014 04:08 PM

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On Mar 19, 2014 8:57 PM Clbt102 wrote:

I am wondering if anyone has heard of a case like mine. I originally started out with single lymph node axillary involvement with unknown primary. Six rounds of platinum based chemo and a lymphadectomy later i was cancer free for four months. Just had my bimonthly scans and i have a new 1.0 cm lymph node below my kidney that is neuroendocrine carcinoma poorly differentiated. I had genotype testing done at "Foundation One". I have 5 genetic mutations, two of them are reactive to Afinitor. So now I am taking Afinitor. Dr wants to put me on afinitor long term. She is telling me that there is no chance for a cure. She is telling me that afinitor may suppress any tumor growth in the future, and that i will be on afinitor the rest of my life. They still have not found my primary spot. Anyone else have a case like mine? Has anyone else had poorly differentiated, high grade NET and done some other treatment? Has anyone with PDNET had any other scan besides CT/PET.. maybe an octreoscan or a Gallium 68? I am feeling like I am the only one in this country that has this cancer! Carrie

I'm guessing your NET is not carcinoid (non-functioning), which then usually has a low chance that PRRT will help. The Octreoscan will be able to determine that. My son also has high-grade neuroendocrine carcinoma. His started with a colon polyp (2010), moved to his liver (2012) and then to his brain (2012-present).  He did not have any other type of cancer which I'm sure makes treatment more complicated.  He had an octreoscan and was told the PRRT would not help, but there is always that chance.   His only chemo was cisplatin and etoposide, which he hasn't had in 2 years.  He had a liver resection in May 2012 and hasn't had any more tumors in the abdomin since then.  He also had brain surgery to remove the largest tumor.  Since then, he has had radiation multiple times for 10 brain tumors.  He was also told that there is no cure.  He has done better than expected and continues to press on.  He is active even though he has lots of body aches and pains due to all the radiation.   

When they did the genetic testing, was is on the NET tumor?  Did they give you any other information besides that Afinitor may help?  We were told that there was no reason to do genetic testing for neuroendocrine tumors.   

I wish you the best and will answer any questions I can.

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by Clbt102 on Thu Jun 26, 2014 05:54 PM

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Yes the genetic testing through Foundation One was in my tumor. It came back with five mutations. I am so glad I had this testing done because several of the clinical trials I am eligible for are based on my mutations. I believe that knowing my mutations may end up saving my life.

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by sephyrob on Tue Jul 01, 2014 02:55 PM

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My husband just found out that he is eligible for a genomic targeted therapy clinical Trial through memorial Sloan Kettering in NYC. We have two more rounds left from the standard chemo (Avastin, irinotecAn and 5fu) and at the end Of July we will do a scan. We are somewhat hesitant to Leave the standard treatment since last scan showed 25% reduction of the tumors. I've researched and found the the clinical trial could save his life. He has two mutations and The oncologist seems to think that this targeted therapy could be in His best interest. These decisions are Mao hard and are actually life changing for the good or bad. We are thinking about entitling in this clinical trial.

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by Clbt102 on Tue Jul 01, 2014 03:31 PM

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What is the name of the clinical trial? Sounds like he is making great progress!! Carrie

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by sephyrob on Wed Jul 02, 2014 12:45 AM

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Sorry about the misspellings. I typed from my tiny phone. I don't know the exact name but it's for BRAF mutation. I'm soooo Over this cancer thing. I just want our lives to be normal Again. I want these tumors to shrink so he could be eligible for surgery Or other things besides chemo. He's depressed and our lives Are affected.

RE: Poorly differentiated, high grade neuroendocrine carcinoma

by tchrist14 on Mon Jul 14, 2014 03:07 AM

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On Mar 19, 2014 8:57 PM Clbt102 wrote:

I am wondering if anyone has heard of a case like mine. I originally started out with single lymph node axillary involvement with unknown primary. Six rounds of platinum based chemo and a lymphadectomy later i was cancer free for four months. Just had my bimonthly scans and i have a new 1.0 cm lymph node below my kidney that is neuroendocrine carcinoma poorly differentiated. I had genotype testing done at "Foundation One". I have 5 genetic mutations, two of them are reactive to Afinitor. So now I am taking Afinitor. Dr wants to put me on afinitor long term. She is telling me that there is no chance for a cure. She is telling me that afinitor may suppress any tumor growth in the future, and that i will be on afinitor the rest of my life. They still have not found my primary spot. Anyone else have a case like mine? Has anyone else had poorly differentiated, high grade NET and done some other treatment? Has anyone with PDNET had any other scan besides CT/PET.. maybe an octreoscan or a Gallium 68? I am feeling like I am the only one in this country that has this cancer! Carrie

We had samples of my wife's cancer sent out 2 weeks ago to Foundation One and have an appointment tomorrow to get the results. 

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