Goblet cell carcinoid with peritoneal carcinamatosis - Stage IV

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RE: Goblet cell carcinoid with peritoneal carcinamatosis - Stage IV

by mercedes6408 on Wed Aug 01, 2018 03:36 PM

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On Aug 01, 2018 2:06 AM Chigdem wrote:

How are you going. My story sounds similar. Can you please tell me how you are progressing. I have had a right hemicolectomy and have been told no spread. So at this stage no chemo.

Hello!  I changed my lifestyle reducing stress and care a great deal about my body but here I am.  I was stage IV and it had spread into my abdominal cavity so HIPEC was life saving.  I would suggest a specialist for you.

RE: Goblet cell carcinoid with peritoneal carcinamatosis - Stage IV

by GoCards on Fri Nov 22, 2019 03:10 AM

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Hello everyone. I was diagnosed in 2013 with GCC stage II. Had hemicolectomy and everything looked good. Lately my Chromagranin numbers have been going up on my last several blood tests. It’s never been out of the normal range, but the last test was 92 and normal is 93. How worried should I be? Are there any other symptoms I should be looking out for?

RE: Goblet cell carcinoid with peritoneal carcinamatosis - Stage IV

by GoCards on Mon Dec 02, 2019 04:50 AM

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On Aug 10, 2015 10:05 AM Fudge21 wrote:

Hi - I hope you folks don't mind me joining from the UK. This seems to be the only active forum I can find for this rare condition. My husband was diagnosed 2 months ago - stage IV. He'd had an appendectomy in 2006, but no follow up - so here we are 9 years later with seedling tumors throughout his abdomen. Consequently, further surgery is not an option right now - spread is too extensive - so we are going to meet an oncologist tomorrow to start chemotherapy. We are hoping to find something that will blitz the seedlings such that surgery (I guess HIPEC) can come back on the table.

Hey Fudge21. I hope everything is going well for you and your husband. I was diagnosed in 2013. I’ve had follow up for the last 6 1/2 years, but not by a specialist. Lately some of my test results have come back with some elevated numbers, but they haven’t been out of the normal ranges, but have been going up over the last several tests. My doctors say it’s nothing to worry about, but that doesn’t help me much with the worrying. Can you tell me what symptoms made your husband have a visit after 9 years? I’d like to know what type of symptoms to be looking out for. Any help would be appreciated. Thank you and God Bless.

RE: Goblet cell carcinoid with peritoneal carcinamatosis - Stage IV

by mercedes6408 on Wed Dec 04, 2019 05:29 PM

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On Dec 02, 2019 4:50 AM GoCards wrote:

On Aug 10, 2015 10:05 AM Fudge21 wrote:

Hi - I hope you folks don't mind me joining from the UK. This seems to be the only active forum I can find for this rare condition. My husband was diagnosed 2 months ago - stage IV. He'd had an appendectomy in 2006, but no follow up - so here we are 9 years later with seedling tumors throughout his abdomen. Consequently, further surgery is not an option right now - spread is too extensive - so we are going to meet an oncologist tomorrow to start chemotherapy. We are hoping to find something that will blitz the seedlings such that surgery (I guess HIPEC) can come back on the table.

Hey Fudge21. I hope everything is going well for you and your husband. I was diagnosed in 2013. I’ve had follow up for the last 6 1/2 years, but not by a specialist. Lately some of my test results have come back with some elevated numbers, but they haven’t been out of the normal ranges, but have been going up over the last several tests. My doctors say it’s nothing to worry about, but that doesn’t help me much with the worrying. Can you tell me what symptoms made your husband have a visit after 9 years? I’d like to know what type of symptoms to be looking out for. Any help would be appreciated. Thank you and God Bless.

Watch EXTREMELY carefully.  I had BIG elevated numbers in October 2017 and a CT, which showed nothing.  I had some bloodwork (CGA) in May 2018, showing high elevation but I did not have the CT at that time.


Life got in the way and I did not get the CT in 2018.... 

In March 2018 I had a moderate vaginal mass that was next to the bladder and rectum but too big to remove without problems.  I have a couple of other small tumors.

If your numbers start to go up.... get MRI..... look extremely carefully and follow closely!  

It IS something to carefully follow.

RE: Goblet cell carcinoid with peritoneal carcinamatosis - Stage IV

by GoCards on Fri Dec 06, 2019 11:16 PM

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I’m sorry to hear you’ve had a recurrence. My thoughts and prayers are with you. Keep me posted on your situation. I’ve been following this thread for several years and I think of everyone that has posted on here often. I don’t know any of you, but I pray for all of you. I saw that someone posted a while back about how to deal with the stress of this disease. I don’t know if there is any answer to that. I’ve worried about it off and on for the last 6 1/2 years. Time helps, but every appointment brings back all the worries. Good luck to everyone. Keep battling.

RE: Goblet cell carcinoid with peritoneal carcinamatosis - Stage IV

by GoCards on Sun Dec 08, 2019 05:33 AM

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I was thinking about your last message. You said to make sure you have an MRI. Why an MRI? I’ve never had an MRI, just CT scans and blood tests.

RE: Goblet cell carcinoid with peritoneal carcinamatosis - Stage IV

by rhg1911 on Sun Dec 08, 2019 03:32 PM

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I also have only had CT scans and blood work...  Interested in this question and upcoming answer.

Thanks!

RE: Goblet cell carcinoid with peritoneal carcinamatosis - Stage IV

by mercedes6408 on Tue Dec 10, 2019 02:40 AM

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On Dec 08, 2019 5:33 AM GoCards wrote:

I was thinking about your last message. You said to make sure you have an MRI. Why an MRI? I’ve never had an MRI, just CT scans and blood tests.

MRIs pick up things CT scans do not.  I also have a combination of CEA and CGA (chromogranin A) blood tests.

RE: Goblet cell carcinoid with peritoneal carcinamatosis - Stage IV

by mercedes6408 on Tue Dec 10, 2019 02:45 AM

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On Dec 08, 2019 3:32 PM rhg1911 wrote:

I also have only had CT scans and blood work...  Interested in this question and upcoming answer.

Thanks!

CTs are considered baseline tests and are fine if your bloodwork is staying the same, but MRIs pick up smaller tumors and are appropriate if your bloodwork is climbing.

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