Poorly Differentiated Neuroendocrine Cancer

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RE: Poorly Differentiated Neuroendocrine Cancer

by MEEMERZ on Sun May 24, 2009 12:00 AM

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i know how u feel my grandad got throat cancer and it has been hard for us all...... It was really hard for us too hear about the news.

 

 

          i am his grandaughter sydney.. pray fro us and we will pray for u!

RE: Poorly Differentiated Neuroendocrine Cancer

by MEEMERZ on Sun May 24, 2009 12:00 AM

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Hi.... My name is sydney..my grandad got cancer and is the best grandad i have ever had and i wanna keep him with us for ever.............................. 

 

RE: Poorly Differentiated Neuroendocrine Cancer

by jcr65566 on Sun May 24, 2009 12:00 AM

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On 3/31/2008 Pats75 wrote:

My husband was diagnosed with cancer six weeks after our wedding in 2004 and he has been battling it ever since.  He is only 34 years old and it has been so difficult watching him go through this.  Has anyone tried any clinical trials?  We are out of chemo options so we are looking at starting a clinical trial.  We had such a hard time even getting a diagnosis in the beginning, very frustrating.  My husband has had 4 major surgeries, 10 different chemotherapy drugs, and many radiation treatments.  We haven't gone more than a month without treatment.  The past month we have been in and out of the hospital due to a new tumor in his small intestine.  We are both in need of some good news.

 

 


 

Hi Pat75 you poor loves sorry to hear what your going though I thought this might help  Ive read in other posts that Differentiated Neuroendocrine Cancer. Ive read  Neuroendocrine controls most of if not all the hormones in the body.  I’ve also read other patient say there doctor say it’s similar to small cell lung cancer and is similarly aggressive. I heard of two patient say they found relief with a 6month cause of liquid cellular Zeolitte 15 drops 4 time a day one patient who was fighting lung cancer said it change his heir color form gray  back to black  I see if I can find the posts and post  them to you  al the Bess Ray

RE: Poorly Differentiated Neuroendocrine Cancer

by CancerStrike2 on Sun May 24, 2009 12:00 AM

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On 12/3/2008 iamajd2b wrote:

Not poorly differentiated neuroendocrine carcinoma.  It's similar to small cell lung cancer and is similarly aggressive.  I have it too.  Just finished eight months of chemo (cisplatin/etoposide), and PET shows NED.  But, as small cell lung cancer, poorly differentiated neuroendocrine carcinoma has a bad track record for coming back.

Hello,

My mom liver's biopsy also labeled as Poorly Differentiate Neuroendocrine Carcinoma.  However, based on the CK-7, Chromogranin and Synatophysin are positive and CK-20 negative along with Pancytokeratin is positive with less pronounced Golgi Patterns, they ruled out it as Small Cell Carcinoma Lung Cancer even tho some of the cells are larger than typical and her Oncologist put my mom on Carboplatin and Etoposide IV Chemo Drugs...  Did not work after the 4th round.

We now strongly believe the pathologist has mis-intepreted the data.  We think (based on website http://www.nature.com/modpathol/journal/v13/n9/fig_tab/38801 ) I think my mom has adenocarcinoma non small cell lung cancer instead.  Her new oncologist agreed and let my mom tried Tarveca right now.  It appears to help her...

Could you possibly pls send me your biopsy test result so we could compare the marker?

Thank you,  God bless all

Regards,

Victoria

RE: Poorly Differentiated Neuroendocrine Cancer

by diamondgirl on Mon May 25, 2009 12:00 AM

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On 5/24/2009 Pats75 wrote:

Hi Lili,

I am so sorry to hear what you are going through especially at your age.  Jamie was diagnosed when he was 31 as well - sometimes we felt isolated because none of our friends were dealing with something so serious.  I hope you have a good support system.  Jamie always maintained a positive attitude..........of course we would have our pity party days but realized we had to fight this!!!

Jamie had a simple knee surgery six weeks after our honeymoon that he just couldn't heal from.  He began getting sick to his stomach and vomiting all night and losing weight.  He then began having terrible back pain in between his shoulder blades.  About 2 months later they finally did a CT scan and found a very large tumor up against his pancreas.  They originally thought it was pancreatic cancer but after biopsy that was ruled out.  The tumor had no primary origin.........it was so frustrating not knowing where this was coming from and thinking how are they going to treat it if they don't know what it is.  After sometime they came up with a Poorly Differentiated Tumor with neurodendocrine features.  So we went forward with chemo (cisplatin) to shrink the tumor followed by surgery and radiation. 

Jamie and I never wanted to know the prognosis (i made the mistake of reading a note from one of the docs indicating he may only have a year- Jamie proved them wrong).  This cancer is so rare how can they possible give us an accurate prognosis.  We chose to just live and fight the disease day by day.  We did get to enjoy some months in remission.  His tumor was just really aggressive and didn't want to go away. 

Do you have a Comprehensive Cancer Center near you?  The problem with the cancer that Jamie had was that not many docs really knew how to treat it.   My insurance was with another health care system so we weren't treated @ UW in the beginning.  My advice would be to see an oncologist that specializes in treatment of neuroendocrine tumors.  Is your tumor poorly differentiated?  Of course I don't know if you and Jamie have the same exact tumor type.

If there are any questions you have for me or just want someone to talk to...please don't hesitate to write. 

Take care,

Patti

 

 


Thank you Patti for your support. I am trying to also maintain a possitive attitude. I am at a good cancer center in Maryland. I do have poorly differentiated tumor...although my docs beleive it is all coming from the Colon....and thats why the colon cancer is playing a role. I just hope they can fix me. .... lili

RE: Poorly Differentiated Neuroendocrine Cancer

by diamondgirl on Mon May 25, 2009 12:00 AM

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On 5/24/2009 MEEMERZ wrote:

Hi.... My name is sydney..my grandad got cancer and is the best grandad i have ever had and i wanna keep him with us for ever.............................. 

 


Hi Sydney. I am sorry to hear about your grandad. I know how hard it is to see your love one go through this nasty illness. I lost my father in December to small cell lung cancer. Now I am going through the cancer myself at age 31. I will tell though I drink this tea which really helps me with my chemotherapy. Its called Vitely-tea. The website is www.hplus.com . I find this tea takes away my nausea, gives me increased energy and keeps my stomach relaxed. If your grandad is on chem....maybe it will help me. I had my first 2 chemo cycles without the tea...and what a difference it has been with my last 2 chemo cycles. I hope that helps. does you grandad have neuroendocrine throat cancer or just throat cancer?

RE: Poorly Differentiated Neuroendocrine Cancer

by audiomagic on Sat Jun 13, 2009 12:00 AM

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This is my first time posting on here so I'll give the whole story and hopefully someone will respond with some good ideas or information.

I took my 31 year old wife to the ER Dec. of 2008 she was having right side abdominal pain.  After several tests and 6 days in the hosptial they found she had spots on the right side of her liver and ordered a needle biopsy.  We received a phone call from our Dr. on Dec. 26th saying she had adenocarcinoma that probably originated in the colon.  In Jan. 09 she had a colonoscopy which revealed the tumor about 3/4 way down her colon.  By that time we had an appointment in St. Louis at Barnes Wash U with a Liver surgeon to look at the possiblity of a liver/colon resection.  A day before our appointment at Wash/u the path came back from the colon stating the tumor was a small cell carcinoma.  Slides and tissue blocks were sent to the path department at Barnes and they determined she had a poorly differentiated high grade neuroendocrine carcinoma.  We saw a specialist at barnes and he started her on a regimen of carboplatin and etopiside.  After six weeks of treatment she had a CT which showed very little tumor shrinkage (tumor is too large in liver and too close to artery to resect).  We continued with the regimen and had another CT six weeks later which showed about 1cm of growth.  We got the impression that the oncologist at barnes had kind of given up on us so we were referred to Mayo clinic in rochester by our local oncologist. Mayo also did a path and agreed with the poorly diff. neuro.  Mayo suggested a regimen called folfoxiri which is a combo of 5fu, irronotecan and oxalaplatin.  After six weeks of this treatment (rough treatment)  no growth no shrinkage.  Our next step is to add avastin in with the current regimen. 

 I've read some replies about sutent.  Is this more promising than avastin? Has it been used on Neuro tumors.  This tumor doesn't express hormones or blood markers like other cancers.  Several Dr.s that have seen the path reports say that this is a very aggressive cancer because when they look at it under a microscope it is very vascular.  That is why I'm hoping the avastin will work.  I think it looks more aggressive under a micrscope than it actually is biologically in her body.

 Has anyone heard of genotyping being performed on NET's?

 

Does anyone have experience with RAD001 with NET's?

RE: Poorly Differentiated Neuroendocrine Cancer

by diamondgirl on Mon Jun 15, 2009 12:00 AM

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On 6/13/2009 audiomagic wrote:

This is my first time posting on here so I'll give the whole story and hopefully someone will respond with some good ideas or information.

I took my 31 year old wife to the ER Dec. of 2008 she was having right side abdominal pain.  After several tests and 6 days in the hosptial they found she had spots on the right side of her liver and ordered a needle biopsy.  We received a phone call from our Dr. on Dec. 26th saying she had adenocarcinoma that probably originated in the colon.  In Jan. 09 she had a colonoscopy which revealed the tumor about 3/4 way down her colon.  By that time we had an appointment in St. Louis at Barnes Wash U with a Liver surgeon to look at the possiblity of a liver/colon resection.  A day before our appointment at Wash/u the path came back from the colon stating the tumor was a small cell carcinoma.  Slides and tissue blocks were sent to the path department at Barnes and they determined she had a poorly differentiated high grade neuroendocrine carcinoma.  We saw a specialist at barnes and he started her on a regimen of carboplatin and etopiside.  After six weeks of treatment she had a CT which showed very little tumor shrinkage (tumor is too large in liver and too close to artery to resect).  We continued with the regimen and had another CT six weeks later which showed about 1cm of growth.  We got the impression that the oncologist at barnes had kind of given up on us so we were referred to Mayo clinic in rochester by our local oncologist. Mayo also did a path and agreed with the poorly diff. neuro.  Mayo suggested a regimen called folfoxiri which is a combo of 5fu, irronotecan and oxalaplatin.  After six weeks of this treatment (rough treatment)  no growth no shrinkage.  Our next step is to add avastin in with the current regimen. 

 I've read some replies about sutent.  Is this more promising than avastin? Has it been used on Neuro tumors.  This tumor doesn't express hormones or blood markers like other cancers.  Several Dr.s that have seen the path reports say that this is a very aggressive cancer because when they look at it under a microscope it is very vascular.  That is why I'm hoping the avastin will work.  I think it looks more aggressive under a micrscope than it actually is biologically in her body.

 Has anyone heard of genotyping being performed on NET's?

 

Does anyone have experience with RAD001 with NET's?


Hello. I read your message. you are the first person that has a similiar situation to myself. I am 31 years old also. Back in Feburary I was diagnosed with neuroendocrine tumor ( poorly differentiated) . I had the spots on my liver, lungs, left breast, left kidney, This was all diagnosed from a liver biopsy. then i had a sigmoidoscopy. they took a biopsy which showed that I also had adrenocarcinoma coming from the colon. So we did 4 cycles of carboplatin and eptoside. My body did respond to the neuroendocrine tumors, but where the adrenocarcinoma in my colon did not respond. also i had 2 tumors ( the bigger ones on my liver that did not respond) . My team wanted then to do surgery to remove where the tumor was in my colon. I just had that done last monday. Now i am recovering from that. my surgeon did mention to me though that he thought instead of me having 2 cancers, he thinks i have rectal cancer with 2 cell lines. meaning...the cancer originated from my colon/rectum area and as it metastasized it eventually becamse more poor differentiation and some stayed together and did not differentiate. So now in a about a month we will treat my liver where the carboplatin /eptoside did not respond with adrenocarcinoma agents such as 5fu and oxplatin? Hopefully if there is shrinkage with that when i will be able to have my liver resected. did your wife have the colon resected? how big is the tumor on the liver that they can not resect currently? i also wanted to let you know that i drank this tea called vitely tea which helped me a great deal with nausea , energy and relaxing my stomach. if you wanted to email me directly ...let me know. looks like your wife and me have a lot in common.

lili

RE: Poorly Differentiated Neuroendocrine Cancer

by lelfrink on Thu Mar 06, 2014 05:08 AM

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hello, we have a family member with the same type of cancers you have. can you provide an update on how you are doing?

RE: Poorly Differentiated Neuroendocrine Cancer

by Clbt102 on Thu Apr 03, 2014 03:23 PM

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Hi Jeff!!! You don't know how excited i am to find you... I have poorly differentiated, high grade neuroendocrine carcinoma... I had it in one lymph node in my armpit.. Went through chemo, radiation, surgery... Was cancer free for five months. Found out in feb i have it again in one lymph node below my kidney... Now I'm on afinitor. They have never found my primary. I have been scouring cancer blogs for someone else like me... In almost a year you are the first person with a case like mine... I am so sorry this has happened to you .. Where are you getting treatment? Email me clbt102@gmail.com Carrie
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