CancerCompass message board discussion started by Plate Spinner on 11/30/2007 http://www.cancercompass.com/message-board/message/all,18527,0.htm Fri, 29 Aug 2008 00:00:00 GMT Fri, 29 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My mother was diagnosed two years ago in September with what they said was Carcinoid.  She just turned 53.  We found out last year at MD Anderson that it was actually Islet Cell Tumor of the Pancreas.  She has tried chemos, it still grew.  She got into a trial with Dr. O"Dorisio in Iowa.  She did the trial drug Rad.  Her kidneys failed.   They think it was a combination of Zometa and RAD.   Many thought (except Dr. Otto.  He said she would regain function in a couple of months.) this was a life sentence, but in June she regained function (she lost them in April, she got function back in June)!  God is awesome!  Right now she is only on sandostatin.  Rad did destroy her largest tumors in her liver.  BUT...the cancer is still everywhere.  Dr. Otto did mention the trial in Switzerland but financially it was impossible.  She goes back to see him in December and we are praying that the trial may be close to being here.  He is such an uplifting doctor and gives her hope that there is still something on the horizon.  Does anyone have anymore information?  I printed off many inspiring messages to give to my mother, and I had to call her when I read the message from Marcie77 and her good news.  Thanks so much! Plate Spinner Fri, 30 Nov 2007 00:00:00 GMT  On 11/30/2007 Plate Spinner wrote:My mother was diagnosed two years ago in September with what they said was Carcinoid.  She just turned 53.  We found out last year at MD Anderson that it was actually Islet Cell Tumor of the Pancreas.  She has tried chemos, it still grew.  She got into a trial with Dr. O"Dorisio in Iowa.  She did the trial drug Rad.  Her kidneys failed.   They think it was a combination of Zometa and RAD.   Many thought (except Dr. Otto.  He said she would regain function in a couple of months.) this was a life sentence, but in June she regained function (she lost them in April, she got function back in June)!  God is awesome!  Right now she is only on sandostatin.  Rad did destroy her largest tumors in her liver.  BUT...the cancer is still everywhere.  Dr. Otto did mention the trial in Switzerland but financially it was impossible.  She goes back to see him in December and we are praying that the trial may be close to being here.  He is such an uplifting doctor and gives her hope that there is still something on the horizon.  Does anyone have anymore information?  I printed off many inspiring messages to give to my mother, and I had to call her when I read the message from Marcie77 and her good news.  Thanks so much!  Stroudle Fri, 04 Jan 2008 00:00:00 GMT  On 11/30/2007 Plate Spinner wrote:My mother was diagnosed two years ago in September with what they said was Carcinoid.  She just turned 53.  We found out last year at MD Anderson that it was actually Islet Cell Tumor of the Pancreas.  She has tried chemos, it still grew.  She got into a trial with Dr. O"Dorisio in Iowa.  She did the trial drug Rad.  Her kidneys failed.   They think it was a combination of Zometa and RAD.   Many thought (except Dr. Otto.  He said she would regain function in a couple of months.) this was a life sentence, but in June she regained function (she lost them in April, she got function back in June)!  God is awesome!  Right now she is only on sandostatin.  Rad did destroy her largest tumors in her liver.  BUT...the cancer is still everywhere.  Dr. Otto did mention the trial in Switzerland but financially it was impossible.  She goes back to see him in December and we are praying that the trial may be close to being here.  He is such an uplifting doctor and gives her hope that there is still something on the horizon.  Does anyone have anymore information?  I printed off many inspiring messages to give to my mother, and I had to call her when I read the message from Marcie77 and her good news.  Thanks so much!I am currently age 55 and was first diagnosised with islet cell tumor of the pancrease in 1989 (age 36).  I had surgery to remove a growth in the pancrease a bit larger than a golf ball, the gall bladder and spleen.  In 2000, I had my second surgery to remove an islet cell tumor that had metasized from my pancrease to my liver.  This growth was 10 cm and removed in full.  In 2005 three islet cell tumors were discovered in the liver.  One was surgerically removed and the other two, located in riskier areas of the liver were treated by RFA (radio frequency ablasion).  I've not been treated with chemo or radiation and have CT scans frequently to look for additional growths.  My quality of life is good and I've found the site at the University of California to have very good information about current treatment options.  Linda Lu Fri, 25 Jan 2008 00:00:00 GMT Thank you for replying to my message.  I will look into the university of California.  Mother is scheduled to meet with a surgeon who will decide if she is strong enough to have a chemo ablation on her liver.  They have not removed any of her tumors because she has so many.  The drug Rad did destroy some and slowed many, but she has the peppering someone had mentioned earlier.  Some of the tumors in her liver have joined together and have formed a larger one.  This is the one they are going to try and destroy, but are also hoping that it will cause some of the others to die off as well.  She has made it two years since diagnosis, but Mayo Clinic seemed to think she had probably had it at least 4-5 years prior to this.  We are always looking, though mother is getting more and more weary since her kidneys failed.  Thank you again.  I was glad to hear of your success in your fight.  I will print off your reply and let her read it.  It always seems to perk her up a little. Plate Spinner Sun, 27 Jan 2008 00:00:00 GMT I an a first time user to this message board, but have used the one available through Johns Hopkins occasionally.  I had a 14cm islet cell tumor removed at Mayo in MN  in 1998 from tail of pancreas, with no subsequent chemo or radiation.  Then had recurrence in 2004 on head of pancreas.  Had Cyberknife radiation at St. Joseph's Hospital in St. Paul, MN.  It stunned the DNA of the tumor cells enough to stop their replication/growth  thus far.  The Cyberknife destroyed the rest of the pancreas so I am now on insulin.  Also have continueing digestive problems, but overall am doing very well and am blessed/privileged with every day I have.  I am 51 now, with 3 boys (ages 20, 19, 14).  My oncologists have said it is unlikely that the Cyberknife radiation killed all of the cancerous cells and at some point they may start to grow again. So I am thinking ahead to next options.  I haven't had an OctreoScan yet, but am considering Octreotide if it looks like I am a candidate for it.Two questions for the others of you with islet cell:1)   If you have used octreotide(Sandostatin), what results have you received from it with regard to tumor growth and relief of digestive symptoms?2)  What medical experts do you know of for islet cell tumors?  Thanks and blessings to all of you!GardenVon GardenVon Sat, 19 Apr 2008 00:00:00 GMT I don't know what you have found out but Sandostatin has helped my mother with controlling of symptoms and has kept it at bay at times.  She is 53 and we are now looking into Switzerland for cancer treatment options.  Her current doctor is Dr. Odorisio in Iowa. I hope you continue to stay ahead of this disease!Blessings,Plate Spinner Plate Spinner Sat, 03 May 2008 00:00:00 GMT