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Neuroendocrine Carcinoma- Poorly Differientated

katiec79
Posts: 2
Joined: Jun 2013

I'm looking for anyone out there who is a survivor or also currently going through treatment. 

I'm 34 yrs old and was diagnosed with Neuroendocrine Carcinoma poorly differientated. It is the very aggresive kind of neuroendocrine cancer. Main tumor was found in the cecum with mets to a lymph node and liver. I am responding well to Cisplatin/Etopisde every 3 weeks. Going in for my 6th round next week. Latest CT scan showed no cancer in cecum or lymph nodes and about 70% shrinkage in the tumors in my liver. I'm curious to hear of what others treatment has been as my doctor it worried about the amount of time I have been on Cisplatin. In addition, the cancer is so aggresive that a specialist at MD Anderson, Dr. Yao said I will need 3 addition rounds of chemotherapy after there is no evidence of cancer.

Any help would be greatly appreciated! 

jhtesq's picture
jhtesq
Posts: 9
Joined: Mar 2013

You sound like you are doing great. 

I had a a NET attached to the junction of my esophagus and stomach and one infected lymph node near my pancreas. It was scary. I received four rounds  carboplatin and etoposide  the last two with 28 days of radiation.  I was lucky to have responded very well and now am cancer free for 9 months and counting.

One thing I learned at the beginning of my journey was "the tissue is the issue". What exasberated my NET was that it was a small cell carcinoma and aggressive (not that any form of cancer is easy).  It sounds like you are in great hands.  I have heard great things about Dr. Yao.  I was treated at Memorial Sloan Kettering Cancer Center (MSKCC) here in NYC.  My oncologist is David Ilson who is a G-D to my wife and I. He was very encouraging from the get go and treats us like long time firends whenever we see him. Everyone at MSKCC is great (everyone) !  I feel blessed.

I hope you continue successfully with your recovery and you will be in my prayers.

Be well,

 

John 

(contact if you wnt: jhtesq@yahoo.com)

pancreas1
Posts: 4
Joined: Aug 2013

I am 37 years old and also had neuroendocrine carcinoma, poorly differentiated of the pancreas with mets to omentum and multiples in liver.  I had 5 rounds of Cisplatin/Etopiside and had a "complete response to chemo".  I just had CT scan this week and its clear  again, 10 months since last chemo, 12 months since diagnosed.  Interesting to hear your dr said 3 rounds of chemo after there is no evidence of cancer. mine did not say that, but after 2 rounds I pretty much had a clear scan already.  Now he says that if I go 2 years they will consider "cured".  I am still very concerned of recurrence, from what I have read it is normal for this cancer to respond well and then it recurrs.  This is the only place i have ever found anyone with something close to what I have.  Good to hear you are responding well.

pancreas1
Posts: 4
Joined: Aug 2013

forgot to add, mine was small cell also.

jhtesq's picture
jhtesq
Posts: 9
Joined: Mar 2013

Its been  10 months since my last radiation treatment and chemo.

I am going in for Scan and Scope in October. See Docs October 14.

Always anxiety provoking.

I am sooooooooooo glad you are doing well.

Gives me continued hope.

Sincerely,

 

John

 

katiec79
Posts: 2
Joined: Jun 2013

Congrats on the clear CT! Your story gives me hope. :)

My doctor also said I would be considered "cured" at 2 yrs. 

They could not even count how many tumors were on my liver so that is probably the doctor wants to do the 3 extra rounds of chemo. It had spread alot. 

I worry about the high recurrance rate too. Just trying to take it all one step at a time. 

deb72
Posts: 4
Joined: Apr 2014

Like I said to pancreas1, I have NEVER heard a doctor say that about NET - but it gives me hope!!!!

My husband - 41 - is on his 3rd round of chemo for high grade PNET (mets to liver). He seems to be responding well - first CT Scan on May 27.

How are YOU doing? Did you have chemo? What kind? Did it work? Where else had your cancer spread? Where are you and what doc are you seeing?

deb72
Posts: 4
Joined: Apr 2014

pancreas1: My husband - 41 - diagnosed in March 2014 with high grade PNET (pancreas - mets to liver). He's on his 3rd round of cisplatin/etopiside this week. CT scan is in a few weeks. I am PRAYING for a miracle here. All I need is hope that his scans can and will become clear at some point and there's a CHANCE that this cancer will NOT return. There have GOT to be stories of high grade PNET patients who have been "cured" can't there be??? I have NEVER heard a doc say that after 2 years it can be considered cured, though.

My husband is being treated in Boston - and all the docs he's seen (including Kulke at Dana Farber) say there is no cure for NETs. ??!! HOPE PLEASE?????

Note that Kulke also suggested TWO more rounds of chemo AFTER my husband's SIX rounds ... just to "make sure".... ??? So that means 8 rounds total. 

Cisplatin sucks - anyone have ringing in their ears/partial blockage?!

And pancreas1 - are you on any alternative therapies? Supplements? Acupuncture??

jhtesq's picture
jhtesq
Posts: 9
Joined: Mar 2013

I was nopt treated with Cisplatin.  My oncologist told me it is too toxic. I was treated with Carboplatin and Etoposide. DO NOT GIVE UP ON YOR HUSBAND ! I am half way through my two year check up and I am doing well.  Maybe consider coming down to NYC at SLoan for an opinion.  It is a great place. My Oncologist is David Ilson and he is a wonderful man and person !

 

deb72
Posts: 4
Joined: Apr 2014

You seriously made my day just by telling me not to give up hope. Do you mind answering some questions?

WHY did your doc say Cisplatin was too toxic? Did you have prior health problems? Mind me asking how old you are? Maybe it was an age thing? What did your halfway catscan tell you? In the end, was the catscan clear or did the tumors just shrink and remain stable? You were high-grade yes? Where did your tumor originate? My husband's was (is?) on his pancreas with mets to liver. 

We are at Beth Israel in Boston - AND at Dana Farber in Boston. Considering going to MDA in Houston to see Dr. Yao as well. 

Are you saying your scans are still clear? Did your doc give you a prognosis??

THANK YOU.

survivingsu's picture
survivingsu
Posts: 34
Joined: Apr 2013

Hi there,

I'm not sure if my experience relates to your kind of cancer, but just in case, I wanted you to know that treatment can be do-able.  I had radiation & chemo simultaneously from July to November, surgery, then follow-up chemo.  That was five years ago come this July.  So far, so good, no reoccurence.

I am wishing you the very best,

Hang in there!

Susan

deb72
Posts: 4
Joined: Apr 2014

Thanks for the response. My husband's cancer is pancreatic neuroendocrine - high grade. They said it wasn't possible to do surgery - I'm not really sure why - because it's spread to liver? But I read about many who had it spread who were still able to be treated with surgery later. Who knows. The hope I get from you is that it's been FIVE YEARS and you've had NO recurrence. AWESOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Mind telling me what they gave you as a prognosis? They make us feel like neuroendocrine - high grade - comes back like wild fire .... that gave us such little hope. 

survivingsu's picture
survivingsu
Posts: 34
Joined: Apr 2013

Hi,

My doctors were upbeat and did not talk about prognosis, only that I had a rare and very serious cancer, and treatment started immediately.  They were great!

Susan

SC-winner
Posts: 1
Joined: Jun 2014

Hi! I'm new to all of this and normally am a very private person - I don't even post on facebook. I joined this discussion board to learn and understand my options and future a little more. And I thank you all for posting your stories. I am still in the shocked, disbelief, and panicky state. I was diagnosed with cancer the first part of June this year after complaining to my DR. more than 2 years and having had colonoscopies and endoscopies of the stomach twice (to incldue a recent visit for each). My Dr. made a few adjustments to my thyroid meds a few times. In early April I finally told my DR that I wanted to see a specialist. I was sent to the GI tract Dr and for ultrasound. From there I was sent for a CT scan and then to a GYN DR. who sent me to another surgeon. He ordered another scan and a biopsy. The initial diagnosis after a biopsy was performed, was germ cell or scarcoma. The Path slides were sent to the Mayo clinic who further diagnosed the tumor to be neuroendocrine. I have 3 masses in the lower pelvis; the largest mass is 9.1 cm X 7.7 cm. This tumor appears to be attached to the tailbone/sacrum and  pushes against the rectum to the extent of making bowel movements very difficult. There are 2 smaller masses - 4 cm, and <2 cm. The smallest mass intersects the syatic nerve. I am finally going to have surgery - within the next 10 days. A CT scan of the pancreas did not show anything by my Dr says that he will examine the pancreas with a scope. I guess after the tumnors have been removed, they will be able to verify - 100% - what kind they  are, etc. Any suggestions on what to ask next or what to do, please post them. Thank you and happy 4th!

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