Poorly Differentiated Neuroendocrine Cancer

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RE: Poorly Differentiated Neuroendocrine Cancer

by gfridman on Wed Sep 19, 2018 01:41 PM

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On May 24, 2009 12:00 AM 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

 

 

Hi. I just found your post now. I am very sorry to hear about your loss but am hoping your experience can help us in treating my father. He is 72. He was diagnosed with High Grade Neuroendocrine Carcinoma in April this year. His primary is in the head of pancreas. His Ki is 80%. After 4 rounds of Carboplatin / Etoposide his tumor significantly reduced and no new tumors are visible. We are being told that he is a candidate for Whipple surgery and his surgeon is at John Hopkins which specializes in laparoscopic Whipple. But our oncologist who is a specialist in this Neuroendocrine (Dr. Edward Wolin) recommendations Radiation instead as he believes that this tumor will respond well to the radiation. In fact we have a very good Radiation Oncologist who is telling us that this is a way to go instead of surgery. You mentioned your husband did have surgeries. What were are they? Did they help? What was the remission period in between? Did it improve his quality of life? Searching for answers as we are trying to pick the right pass. Would love to hear your thoughts.

RE: Poorly Differentiated Neuroendocrine Cancer

by melturny on Wed Sep 19, 2018 03:20 PM

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Sadly in June 2017 at the age of 33 Derek passed away. He fought it for 3 years since diagnosis and did countless treatments. We too enjoyed about 6-10 months of remission together with our little family. But in the end there was nothing the doctors could do. Out of everything he tried, the treatment that worked best for him was CAPTEM. Good luck in your journey. Nobody should ever have to endure this.

Melissa

RE: Poorly Differentiated Neuroendocrine Cancer

by gfridman on Wed Sep 19, 2018 03:52 PM

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So sorry for your loss and so greatfullh for your answer. Hope you can find happiness again.

RE: Poorly Differentiated Neuroendocrine Cancer

by lizdwan on Wed Sep 19, 2018 04:40 PM

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poorly differentiated tumours with neuroendocrine features seem to baffle so many oncologists.  The outcomes are generally poor but i do believe that in the future, immunotherapy will be the most successful treatment.  its now 3 years since my husband died, 17 months after diagnosis.  we tried chemotherapy and radiotherapy and he got great results but they didnt last.  His Ki index was > 90%, so was refused all other treatments.  So hard to see the one you love dying when they want to live so much.  My heart goes out to anyone dealing wth this.



RE: Poorly Differentiated Neuroendocrine Cancer

by gfridman on Wed Sep 19, 2018 05:13 PM

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On Sep 19, 2018 4:40 PM lizdwan wrote:

poorly differentiated tumours with neuroendocrine features seem to baffle so many oncologists.  The outcomes are generally poor but i do believe that in the future, immunotherapy will be the most successful treatment.  its now 3 years since my husband died, 17 months after diagnosis.  we tried chemotherapy and radiotherapy and he got great results but they didnt last.  His Ki index was > 90%, so was refused all other treatments.  So hard to see the one you love dying when they want to live so much.  My heart goes out to anyone dealing wth this.



Thank you for sharing your experience. Was your husband ever offered surgery? We are now given a choice to either do surgery or chemo+radiation. The doctor is saying the chemo+radiation will be as effective in removing it? We are trying to decide which way to go.

RE: Poorly Differentiated Neuroendocrine Cancer

by Clbt102 on Wed Sep 19, 2018 05:29 PM

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Avelumab/Bavencio is a new immunotherapy drug that is showing great promise for neuroendocrine tumors. Ask your dr about getting it through the compassionate use program. 

Carrie 

RE: Poorly Differentiated Neuroendocrine Cancer

by lizdwan on Thu Sep 20, 2018 09:50 AM

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He was never offered surgery, just chemo and radiotherapy.  I feel now in hindsight that surgery may have been a better option, however, their arguments were that the surgery was  not going work because the cancer was in the lymph nodes in the groin as well as the armpit, when i suggested clinical trials,we were told he would have to travel to the U.S. and he would not know if he was getting a placebo or not.  Just keep on going, ask all the questions, do the research and never gve up.  We also visited an Integrated cancer specialist in London, Chris Etheridge.  He suggested the no sugar no red meat, no processed food and supplements including mitake mushrooms etc.  It did help for a while  and he looked really well.  i believe that we all have our own individual immune systems and that the same prognosis is not necessarily true for all of us from the same diagnosis.  Please keep on fighting.

RE: Poorly Differentiated Neuroendocrine Cancer

by DStone on Fri Apr 26, 2019 06:33 AM

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Hello, First of all, I’m saddened by the news of the brave souls who have passed away and I offer my condolences to their family and friends. I am 37 yo and I have metastatic poorly differentiated PNET. I was diagnosed at 31 yo. just after my engagement to my now husband. I would be happy to help others by answering any questions you may have regarding my current and previous treatment regimen(s). This is an awful disease and it tends to cause a lot of strain on our lives and those who are along for the ride. I’d also like to point out that if you or someone you know has been diagnosed with neuroendocrine cancer please at least seek a second opinion from a NET specialist. My care is under a fantastic Oncologist by the name of Dr. Jennifer Chan at the Dana-Farber Cancer Institute. Take care, Danielle

RE: Poorly Differentiated Neuroendocrine Cancer

by PD_NEC on Sat Jun 08, 2019 12:49 PM

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On Sep 19, 2018 5:13 PM gfridman wrote:

On Sep 19, 2018 4:40 PM lizdwan wrote:

poorly differentiated tumours with neuroendocrine features seem to baffle so many oncologists.  The outcomes are generally poor but i do believe that in the future, immunotherapy will be the most successful treatment.  its now 3 years since my husband died, 17 months after diagnosis.  we tried chemotherapy and radiotherapy and he got great results but they didnt last.  His Ki index was > 90%, so was refused all other treatments.  So hard to see the one you love dying when they want to live so much.  My heart goes out to anyone dealing wth this.



Thank you for sharing your experience. Was your husband ever offered surgery? We are now given a choice to either do surgery or chemo+radiation. The doctor is saying the chemo+radiation will be as effective in removing it? We are trying to decide which way to go.
Hi, sorry to intervene but I strongly feel that surgery would be the way to go. I know I am not a medical professional but I am a former caregiver. From my experience (father had PD-NEC with tumor in the rectum) chemo (especially etopocide) works brilliantly for the first 3/4 rounds but the fact of the matter is that chemo does NOT kill cancer stem cells. Also neuroendocrine carcinoma as we all know will come back even after NED (there are always exceptions). The best course of action is to cut off that root cause after the first few cycles of chemo gives you good results. I had argued with my dads oncos about this and they just refused to indulge in surgery. I explained to them that his primary tumor is in the rectum and that’s the root cause of his issues so why not cut that piece off?? And they were like oh we can do it but what if there grows another tumor elsewhere, all our efforts will go to waste. I am like there has been no other tumor growth elsewhere since these past 3 months! I hate myself for not taking another opinion.Of course living in a different country also made it more difficult. We stuck with the same docs and this I feel has been my critical mistake which I have to live with for the rest of my life. And after my dad’s passing whichever doc I happen to meet is telling me how surgery would have been the best course of action after we had achieved NED after the first 3 cycles. So please I beg of you to cut the head of the pancreas off.

RE: Poorly Differentiated Neuroendocrine Cancer

by DStone on Sat Jun 08, 2019 02:23 PM

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Unfortunately I am not a candidate for surgery because I have mets in the liver, pancreas and bone where I have tumors in my skull, spine, pelvis and hip. I am currently receiving PRRT. My second treatment is on Tuesday. I do think if someone is a candidate for surgery that would most likely be the best option before treatments. Take care of yourselves and those you love <3
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