Comments for NET Patient Foundation http://www.netpatientfoundation.org Welcome to your neuroendocrine cancer community website Wed, 22 Feb 2012 17:42:52 +0000 hourly 1 http://wordpress.org/?v=3.1 Comment on High Grade NETs by Kay Huff http://www.netpatientfoundation.org/2012/02/high-grade-nets/#comment-304 Kay Huff Wed, 22 Feb 2012 17:42:52 +0000 http://www.netpatientfoundation.org/?p=1047#comment-304 I am newly diagnosed and looking for answers. I am newly diagnosed and looking for answers.

]]> Comment on Join the World NET Community by Geoff Earland http://www.netpatientfoundation.org/2010/11/net-cancer-day/#comment-297 Geoff Earland Fri, 17 Feb 2012 17:10:36 +0000 http://www.netpatientfoundation.org/?p=13#comment-297 Hi I was diagnosed with carcinoid tumour in Dec 2010. It was mis- diagnosed for years as IBS (not uncommon) Since when I have had the primary successfully removed from the small bowel. The plan to remove 60% of the liver to get most of the secondaries was aborted due to a leaking tricuspid valve ( which has now been successfully replaced). I still have some damage to the pulmonary valve to be dealt with. I am on a four weekly injection of sandostatin, which reduces most of my symptoms. ( a low saturated fat diet helps reduce the diarrhoea and I take 'creon' which helps a great deal also). I am now commencing radionuclide therapy at King's Hospital to shrink the tumours. I don't pay for any of the treatment as it is funded by my PCT. My quality of life is not bad for a 56 year old retired firefighter, I still work part-time and swim and walk etc Hope this helps good luck. PS I am expecting at least 5 good years but am willing to do more to get more Hi
I was diagnosed with carcinoid tumour in Dec 2010. It was mis- diagnosed for years as IBS (not uncommon) Since when I have had the primary successfully removed from the small bowel. The plan to remove 60% of the liver to get most of the secondaries was aborted due to a leaking tricuspid valve ( which has now been successfully replaced). I still have some damage to the pulmonary valve to be dealt with. I am on a four weekly injection of sandostatin, which reduces most of my symptoms. ( a low saturated fat diet helps reduce the diarrhoea and I take ‘creon’ which helps a great deal also). I am now commencing radionuclide therapy at King’s Hospital to shrink the tumours. I don’t pay for any of the treatment as it is funded by my PCT. My quality of life is not bad for a 56 year old retired firefighter, I still work part-time and swim and walk etc Hope this helps good luck. PS I am expecting at least 5 good years but am willing to do more to get more

]]> Comment on Join our Patient Panel by lia ceccarelli http://www.netpatientfoundation.org/2012/01/join-our-patient-panel/#comment-287 lia ceccarelli Fri, 03 Feb 2012 09:20:00 +0000 http://www.netpatientfoundation.org/?p=1038#comment-287 Net Italy patients association is borning in Italy. I'm keeping in touch with you. Please, follow me as facebook NetItaly Gep-Net Lia Ceccarelli Roma Italy Net Italy patients association is borning in Italy. I’m keeping in touch with you.

Please, follow me as facebook NetItaly Gep-Net
Lia Ceccarelli
Roma Italy

]]> Comment on Join our Patient Panel by Brian Rubin http://www.netpatientfoundation.org/2012/01/join-our-patient-panel/#comment-284 Brian Rubin Wed, 01 Feb 2012 20:43:40 +0000 http://www.netpatientfoundation.org/?p=1038#comment-284 Hi Sandy I am Brian from Hove. I had a similar type of resection done in 1998 for carcinoid tumors without the syndrome, with 4 ft of small intestine plus a couple of lymph glands and the appendix all being whipped out at the same time. The surgeon also said there were tumors in the liver and that he wanted to go back in later and get rid of those, but I told him he had had his chance and not again. So 14 years later the liver tumors have come back with a few friend in other places - too many to remove-, but are well controlled with octreotide. So life is great and goes along pretty well. Carcinoid is relatively slow growing so hang in there (I presume your hubby has carcinoid). I wish you both well and all strength to you Brian Hi Sandy

I am Brian from Hove. I had a similar type of resection done in 1998 for carcinoid tumors without the syndrome, with 4 ft of small intestine plus a couple of lymph glands and the appendix all being whipped out at the same time. The surgeon also said there were tumors in the liver and that he wanted to go back in later and get rid of those, but I told him he had had his chance and not again. So 14 years later the liver tumors have come back with a few friend in other places – too many to remove-, but are well controlled with octreotide. So life is great and goes along pretty well. Carcinoid is relatively slow growing so hang in there (I presume your hubby has carcinoid).

I wish you both well and all strength to you

Brian

]]> Comment on Join our Patient Panel by Steve hall http://www.netpatientfoundation.org/2012/01/join-our-patient-panel/#comment-283 Steve hall Wed, 01 Feb 2012 09:14:05 +0000 http://www.netpatientfoundation.org/?p=1038#comment-283 Had two NETS removed last year in small bowel plus several lymph nodes. Waiting for an operation to remove a further lymph node that has swollen. Based Manchester, England. Had two NETS removed last year in small bowel plus several lymph nodes. Waiting for an operation to remove a further lymph node that has swollen. Based Manchester, England.

]]> Comment on Join the World NET Community by Sandy Caplan http://www.netpatientfoundation.org/2010/11/net-cancer-day/#comment-280 Sandy Caplan Wed, 01 Feb 2012 01:58:47 +0000 http://www.netpatientfoundation.org/?p=13#comment-280 My husband is recovering from small bowel resection for primary NETs inmesenteric lymph nodes & 3 secondary tumors on liver. Gall bladder & appendix also removed. Conflicting lab work show primary as Grade 1 & Grade 3. Follow up in3 months. My husband is recovering from small bowel resection for primary NETs inmesenteric lymph nodes & 3 secondary tumors on liver. Gall bladder & appendix also removed. Conflicting lab work show primary as Grade 1 & Grade 3. Follow up in3 months.

]]> Comment on Join our Patient Panel by Sandy Caplan http://www.netpatientfoundation.org/2012/01/join-our-patient-panel/#comment-279 Sandy Caplan Wed, 01 Feb 2012 01:55:20 +0000 http://www.netpatientfoundation.org/?p=1038#comment-279 Recovering from NETs surgery to small intestine, liver, gall bladder, appendix& lymph nodes. Recovering from NETs surgery to small intestine, liver, gall bladder, appendix& lymph nodes.

]]> Comment on Join our Patient Panel by Sandy Caplan http://www.netpatientfoundation.org/2012/01/join-our-patient-panel/#comment-278 Sandy Caplan Wed, 01 Feb 2012 01:51:39 +0000 http://www.netpatientfoundation.org/?p=1038#comment-278 My husband was diagnosed with NET with secondary tumors in the liver. He had prostate cancer in 1992 & kidney cancer in2007, plus 5 bypasses in2004. We are leaving Duke univ hospital after 10 days. My husband had 3 secondary liver tumors removed, gall bladder & appendix removed, two ft of small intestine removed & primary meds enteric lymph nodes removed. Pathology reports conflict with both grade 1 & grade 3 levels reported. Which is is? All visible cancer has been removed , but positive edges remain. Follow up scans & lab work scheduled for June. Going forward with life, one day at a time. My husband was diagnosed with NET with secondary tumors in the liver. He had prostate cancer in 1992 & kidney cancer in2007, plus 5 bypasses in2004.
We are leaving Duke univ hospital after 10 days. My husband had 3 secondary liver tumors removed, gall bladder & appendix removed, two ft of small intestine removed & primary meds enteric lymph nodes removed. Pathology reports conflict with both grade 1 & grade 3 levels reported. Which is is? All visible cancer has been removed , but positive edges remain. Follow up scans & lab work scheduled for June.
Going forward with life, one day at a time.

]]> Comment on Join the World NET Community by Brenda http://www.netpatientfoundation.org/2010/11/net-cancer-day/#comment-267 Brenda Tue, 24 Jan 2012 21:41:43 +0000 http://www.netpatientfoundation.org/?p=13#comment-267 Hello. So sorry to hear of your diagnosis as well. I underwent a small bowel resection (primary site) where 30% was removed and also had my right lobe of the liver removed. They removed 60% of my liver. This surgery was done on 12/28/11. I had several pulmonary complications following surgery. I am now home and on the long road to recovery. My surgeon says I am progressing well, but with little family support and a long road ahead, I am finding myself an emotional mess. I tend to weep frequently and am feeling sad most of the time. I hope this passes. I have also not had a cigarette since the day of my surgery and am being weaned from the pain meds that I had been on for over 2 years prior to my diagnosis. I am thinking that these 2 factors and the surgery itself are contributing to the meloncholy. I hope you are getting along well. Please keep me posted. God bless!! Hello. So sorry to hear of your diagnosis as well. I underwent a small bowel resection (primary site) where 30% was removed and also had my right lobe of the liver removed. They removed 60% of my liver. This surgery was done on 12/28/11. I had several pulmonary complications following surgery. I am now home and on the long road to recovery. My surgeon says I am progressing well, but with little family support and a long road ahead, I am finding myself an emotional mess. I tend to weep frequently and am feeling sad most of the time. I hope this passes. I have also not had a cigarette since the day of my surgery and am being weaned from the pain meds that I had been on for over 2 years prior to my diagnosis. I am thinking that these 2 factors and the surgery itself are contributing to the meloncholy. I hope you are getting along well. Please keep me posted. God bless!!

]]> Comment on Join the World NET Community by Bev http://www.netpatientfoundation.org/2010/11/net-cancer-day/#comment-258 Bev Fri, 20 Jan 2012 09:33:55 +0000 http://www.netpatientfoundation.org/?p=13#comment-258 I had a liver tumor that was removed and told it was an endocrine tumor but not a primary. I have recently had the news that although they are unable to find a primary my liver has now many tumors and they are unable to cure this. I am trying to be positive and think that I will be ok but to be honest it is hard and I am very worried. Has anyone heard of this situation and how did they cope~? thank you xx I had a liver tumor that was removed and told it was an endocrine tumor but not a primary. I have recently had the news that although they are unable to find a primary my liver has now many tumors and they are unable to cure this. I am trying to be positive and think that I will be ok but to be honest it is hard and I am very worried. Has anyone heard of this situation and how did they cope~?

thank you xx

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