CancerCompass message board discussion started by Marcie77 on 7/3/2008 http://www.cancercompass.com/message-board/message/all,25667,0.htm Sun, 23 Nov 2008 00:00:00 GMT Sun, 23 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello again..This is to update all my friends and anyone else suffering from Islet Cell/Neuroendocrine Tumors.  I haven't posted for awhile, but I wanted to share,that I am now 1 year post treatment in Basel for multiple mets associated with my pancreatic cancer, non functioning islet cell.  I just had my recent scans and I'm still in complete remission.  No new liver mets..liver is clean..bone lesions all remain inactive..No new lesions anywhere.  I am not taking Sandostatin..I feel great..working parttime.  I encourage anyone who has been diagnosed with this type of cancer to read the many entries on this site..Hello to all my friends from this site..Hope everyone else is doing well..Sincerely, Marcie Reber, RN, BSN, MSM Marcie77 Thu, 03 Jul 2008 00:00:00 GMT Fantastic and wonderful news!!!  I'm very glad to hear your scans still show remission - what an inspiration to us all.  It is also encouraging to hear that you are working part-time and feeling great!  God Bless you ;-) ForMyMom Thu, 03 Jul 2008 00:00:00 GMT great to hear that your doing great!!  What kind of treatments did you have exactly?  Where did you go for treatment?  I too have a neuroedocrine islet cell pancreatic tumor. Don Anthony Fri, 04 Jul 2008 00:00:00 GMT  On 7/3/2008 Marcie77 wrote:Hello again..This is to update all my friends and anyone else suffering from Islet Cell/Neuroendocrine Tumors.  I haven't posted for awhile, but I wanted to share,that I am now 1 year post treatment in Basel for multiple mets associated with my pancreatic cancer, non functioning islet cell.  I just had my recent scans and I'm still in complete remission.  No new liver mets..liver is clean..bone lesions all remain inactive..No new lesions anywhere.  I am not taking Sandostatin..I feel great..working parttime.  I encourage anyone who has been diagnosed with this type of cancer to read the many entries on this site..Hello to all my friends from this site..Hope everyone else is doing well..Sincerely, Marcie Reber, RN, BSN, MSMHello MarcieI'm very pleased to hear about your good news!  This is possibly good news for other NET patients too.  Can you give us all more details of your treatment?Tim timbj Wed, 16 Jul 2008 00:00:00 GMT  On 7/16/2008 timbj wrote: On 7/3/2008 Marcie77 wrote:Hello again..This is to update all my friends and anyone else suffering from Islet Cell/Neuroendocrine Tumors.  I haven't posted for awhile, but I wanted to share,that I am now 1 year post treatment in Basel for multiple mets associated with my pancreatic cancer, non functioning islet cell.  I just had my recent scans and I'm still in complete remission.  No new liver mets..liver is clean..bone lesions all remain inactive..No new lesions anywhere.  I am not taking Sandostatin..I feel great..working parttime.  I encourage anyone who has been diagnosed with this type of cancer to read the many entries on this site..Hello to all my friends from this site..Hope everyone else is doing well..Sincerely, Marcie Reber, RN, BSN, MSMHello MarcieI'm very pleased to hear about your good news!  This is possibly good news for other NET patients too.  Can you give us all more details of your treatment?TimTim, I'd be happy to share information with anyone, I just need to know your/their specific type of pancreatic cancer and their treatment so far..Marcie  Marcie77 Wed, 16 Jul 2008 00:00:00 GMT Hi Marcie Thanks for the quick response.  I've got  non-functioning nuroendocrine tumour which orginated on the pancreas.  In 2005, I had a near-death experience caused by the impact of the primary tumour on my splenic vein.  At 4am one day, I suffered a massive bleed into my stomach from gastric varices as a result of the splenic vein occlusion.  20 minutes later, I nearly died from hypovolaemic shock in the A&E department.  A week or so later, I was reprieved by an angiographic procedure which blocked off the varices.  A few days later, I was diagnosed with a non-functioning NET and scheduled for surgery in June. It was a long and complex resection - took nearly seven hours in theatre.  I had a distal pancreatectomy, splenectomy, adrenalectomy and sleeve gastrectomy.  It's a hell of a way to lose weight!  Fortunately, I had a surgeon at St James' s Hospital in Leeds, UK, whose brow I feel has been touched by the Almighty - Krishna Menon saved my life.  He is, in addition, a very nice, humble, considerate, delightful human being.Less than 2 years later, I had a wedge resection on segemtn 2 of my liver to remove a single metastasis.  Now, I have a further six lesions on my liver which are too small and widely spread to justify radical resection at this time. I'm thinking about joining a chemo clinical trial and I want to research which one is most likely to give a good result. My latest Ki-67 reading is 5.6. My tumor is not very sensitive to Octreotide scans (actually Indium 111 -pentetreotide) so I'm not a good candidate for piggy-backed radiotherapy using that analogue.  Maybe SOM-230 may be useful - I don't know which somatostatin receptors are well expressed. Is that enough to go on? I'm so grateful that people like you don't dance off off into the sunset when you get fixed and forget the fellow travellers on this journey which non of us bought a ticket for.Tim  timbj Wed, 16 Jul 2008 00:00:00 GMT