Goblet cell carcinoid with peritoneal carcinamatosis - Stage IV

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Goblet cell carcinoid with peritoneal carcinamatosis - Stage IV

by mercedes6408 on Thu Nov 11, 2010 04:03 PM

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I'd love to find someone out there with appendix cancer.  I have goblet cell carcinoid and am aware there are many different kinds of appendix cancer even though the dang stuff is so rare.

I had my first surgery Christmas Eve 2009, followed by the HIPEC procedure in March and now six months of systemic chemotherapy.

My last two CT scans are clear.  My doctor says I'm now in remission.  Can it be true?

Would love to find others with goblet cell carcinoid to discuss this disease.

RE: Goblet cell carcinoid with peritoneal carcinamatosis - Stage IV

by hpsquad on Fri Nov 12, 2010 04:12 AM

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On Nov 11, 2010 4:03 PM mercedes6408 wrote:

I'd love to find someone out there with appendix cancer.  I have goblet cell carcinoid and am aware there are many different kinds of appendix cancer even though the dang stuff is so rare.

I had my first surgery Christmas Eve 2009, followed by the HIPEC procedure in March and now six months of systemic chemotherapy.

My last two CT scans are clear.  My doctor says I'm now in remission.  Can it be true?

Would love to find others with goblet cell carcinoid to discuss this disease.

I have stage iv goblet cell appendix cancer as well.  Surgery 11/09 then 6 months of folfox with avastin.  My last two CT scans were clean.  My doctors will not say that I am in remission or cured.  They said that they don't know enough about the cancer to place a label on where I am.  As you probably know, there are many sites out there with various predictions so we can only plan to be in the group that survives for many years and then it's out of our hands.  

Bette

RE: Goblet cell carcinoid with peritoneal carcinamatosis - Stage IV

by Eljon on Wed Dec 08, 2010 12:04 AM

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On Nov 12, 2010 4:12 AM hpsquad wrote:

On Nov 11, 2010 4:03 PM mercedes6408 wrote:

I'd love to find someone out there with appendix cancer.  I have goblet cell carcinoid and am aware there are many different kinds of appendix cancer even though the dang stuff is so rare.

I had my first surgery Christmas Eve 2009, followed by the HIPEC procedure in March and now six months of systemic chemotherapy.

My last two CT scans are clear.  My doctor says I'm now in remission.  Can it be true?

Would love to find others with goblet cell carcinoid to discuss this disease.

I have stage iv goblet cell appendix cancer as well.  Surgery 11/09 then 6 months of folfox with avastin.  My last two CT scans were clean.  My doctors will not say that I am in remission or cured.  They said that they don't know enough about the cancer to place a label on where I am.  As you probably know, there are many sites out there with various predictions so we can only plan to be in the group that survives for many years and then it's out of our hands.  

Bette

Hello!

My mother have the diagnose Goblet cell carcinoid in july, after operation. She had 3 chemo in juni first, and then operation and then 3 chemo. Now 3 chemo more. She did not get "HIPEC procedure". They do not give that in Copenhagen in denemark. Do you  think the HIPEC procedure i helpfull? Should we try to get it to her?

Eljon

 

RE: Goblet cell carcinoid with peritoneal carcinamatosis - Stage IV

by mercedes6408 on Wed Dec 08, 2010 04:27 PM

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Is it Eljon?  Hi.  Elsie here.  The research I have read indicates that it is believed that the HIPEC procedure is saving lives.  It is heated chemo placed into the abdominal cavity to kill cancer cells that float around and implant into the body and grow.  

The HIPEC procedure may not be available to your Mom due to the scar tissue that no doubt has built up since her surgery in July.  However, it would be beneficial for you to always do research to find out what options are available.  I can also give you a link to the doctor that did my procedure.  It is not a commonly performed procedure and there are specially trained doctors that perform it.  I was very fortunate that one of these specialists is practicing here in the Twin Cities area in Minnesota.

Please contact me privately if you would like my email address to have more in depth conversation regarding what treatment I have had.  What kind of chemo is she having?

RE: Goblet cell carcinoid with peritoneal carcinamatosis - Stage IV

by cancersucks57 on Tue Dec 14, 2010 05:38 AM

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My husband is a stage IV GCC also.  While it is good news that your CT Scans are clear, you have to be watched like a hawk!  Peritoneal carcinomatosis from this cancer makes tiny tumors like seeds and they cannot be detected by CT or PET.  It has been our experience that what is noticed on the scans is fluid build up (ascites) from the GCC if tumors are present.  Who did your HIPEC and what chemo are you currently on?  My husband was first diagnosed in 2003 as stage 3 and the cancer returned in 2008 as stage 4.  He had HIPEC summer of 08 and again December 2009.  He is now on Folfiri for another recurrance.  God Bless and stay well.  This is a horrible cancer. 

RE: Goblet cell carcinoid with peritoneal carcinamatosis - Stage IV

by mercedes6408 on Wed Dec 15, 2010 03:24 PM

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On Dec 14, 2010 5:38 AM cancersucks57 wrote:

My husband is a stage IV GCC also.  While it is good news that your CT Scans are clear, you have to be watched like a hawk!  Peritoneal carcinomatosis from this cancer makes tiny tumors like seeds and they cannot be detected by CT or PET.  It has been our experience that what is noticed on the scans is fluid build up (ascites) from the GCC if tumors are present.  Who did your HIPEC and what chemo are you currently on?  My husband was first diagnosed in 2003 as stage 3 and the cancer returned in 2008 as stage 4.  He had HIPEC summer of 08 and again December 2009.  He is now on Folfiri for another recurrance.  God Bless and stay well.  This is a horrible cancer. 

I am so excited to find people with this rare disease.  It is terrible having a rare cancer.  My debulking surgery was 12/24/2009.  The HIPEC was performed by Todd Tuttle, M.D., here in Minnesota at the University of Minnesota Hospital (Fairview University Medical Center) in March.  As you know, there are not many doctors performing this treatment.  I began chemo 04/24/10 with the FOLFOX regimen but had an almost immediate adverse reaction to the protocol in the manner of cardiomyopathy.  When I recovered from that episode I began Irinotecan and the monoclonal antibody Panatumumab.  This six month protocol was finished on 10/26/10.  I'm 50 and now trying to recover.  My next CT, CgA, and blood work is in February 2011.  You can imagine how excited I am to hear that his cancer was found in 2003 and he is still here.  I have an almost-16 year old I want to see graduate!  I am surprised that he had the HIPEC in 08 and again in 09.  Isn't it the worst ever pain?  Where are you having the HIPEC?  Have you had the octreocide scan?  What has his Cga been?

RE: Goblet cell carcinoid with peritoneal carcinamatosis - Stage IV

by skier on Wed Apr 13, 2011 11:29 PM

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How are you doing now? I have a recurrance with abdominal seeding and am looking for people with Goblet Cell Carcinoid. My doctors do not think is will work on GCC.

RE: Goblet cell carcinoid with peritoneal carcinamatosis - Stage IV

by mercedes6408 on Wed Apr 13, 2011 11:46 PM

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On Apr 13, 2011 11:29 PM skier wrote:

How are you doing now? I have a recurrance with abdominal seeding and am looking for people with Goblet Cell Carcinoid. My doctors do not think is will work on GCC.

So far so good (last chemo 10/10); coming up on the six-month CT scan.  I've written you a private message with contact information.

RE: Goblet cell carcinoid with peritoneal carcinamatosis - Stage IV

by Kapps on Fri Jul 29, 2011 08:51 PM

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On Nov 11, 2010 4:03 PM mercedes6408 wrote:

I'd love to find someone out there with appendix cancer.  I have goblet cell carcinoid and am aware there are many different kinds of appendix cancer even though the dang stuff is so rare.

I had my first surgery Christmas Eve 2009, followed by the HIPEC procedure in March and now six months of systemic chemotherapy.

My last two CT scans are clear.  My doctor says I'm now in remission.  Can it be true?

Would love to find others with goblet cell carcinoid to discuss this disease.

I had goblet cell carcinoid 8/08 and am doing okay. I was stage II and my Oncologist is letting me stop coming. I do not agree with her. My other doctor retired and so I called the cancer society and they gave me a place to go that is close to my home. I had an appendectomy with right hemicolectomy. I'm not happy about being dismissed because everything I have read says that it can come back in fve years ,ten years,and Twenty years. I feel I should be seen at least twice a year for five years and evey year after that for the rest of my life. It is very scary to me to have this disease when we have so few people that have had it. The bet information I have found is by the World Journal of Surgical Oncology. The web site is htt://ww.wjso.com/content/3/1/36. I hope this helps you. Jane

RE: Goblet cell carcinoid with peritoneal carcinamatosis - Stage IV

by Kapps on Fri Jul 29, 2011 09:07 PM

Quote | Reply

On Jul 29, 2011 8:51 PM Kapps wrote:

On Nov 11, 2010 4:03 PM mercedes6408 wrote:

I'd love to find someone out there with appendix cancer.  I have goblet cell carcinoid and am aware there are many different kinds of appendix cancer even though the dang stuff is so rare.

I had my first surgery Christmas Eve 2009, followed by the HIPEC procedure in March and now six months of systemic chemotherapy.

My last two CT scans are clear.  My doctor says I'm now in remission.  Can it be true?

Would love to find others with goblet cell carcinoid to discuss this disease.

I had goblet cell carcinoid 8/08 and am doing okay. I was stage II and my Oncologist is letting me stop coming. I do not agree with her. My other doctor retired and so I called the cancer society and they gave me a place to go that is close to my home. I had an appendectomy with right hemicolectomy. I'm not happy about being dismissed because everything I have read says that it can come back in fve years ,ten years,and Twenty years. I feel I should be seen at least twice a year for five years and evey year after that for the rest of my life. It is very scary to me to have this disease when we have so few people that have had it. The bet information I have found is by the World Journal of Surgical Oncology. The web site is htt://ww.wjso.com/content/3/1/36. "" target="_blank" rel="nofollow">htt://ww.wjso.com/content/3/1/36. " target="_blank" rel="nofollow">htt://ww.wjso.com/content/3/1/36. I hope this helps you. Jane
I entered the wrong thing .The web site is http://www.wjso.com/content/3/1/36. Sorry Jane
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