CancerCompass message board discussion started by ohiomike on 1/22/2008 http://www.cancercompass.com/message-board/message/all,19995,0.htm Sun, 07 Sep 2008 00:00:00 GMT Sun, 07 Sep 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My wife and I are new to this conference (she is the patient)and still have much to learn about noids. She has been on Sando since she was first diagnosed in late 2005 and (based on my understanding) is one of the fortunate few who have experienced a major decrease in liver mets since beginning Sando. She started with the usual regimine of sub Q for several weeks and then went to LAR which she has continued with. We just learned about the pump and are currently looking into switching to that for (presumably) better control & optimization of Octrotide level.My question is this: We have heard from several sources that, eventually, Sando becomes less effective. Is this true? If so, how long does it take for this to happen? Does "less effective" mean less effective in controling carcinoid syndrome, tumor growth, or both? My wife has never had carcinoid syndrome. Am I correct in assuming that the pump should help lesson the likely-hood that the Sando will become less effective by maintaining the optimum level of Octreotide.Thanks very much for any and all input the Group may have.Mike Hardy ohiomike Tue, 22 Jan 2008 00:00:00 GMT We just ask my husbands doctor about building a tolerance to sando - he said that it does happen but it takes many years.  I am not sure about the other specifics related to your question.  Where is she treated?? Live4him Sat, 29 Mar 2008 00:00:00 GMT  On 1/22/2008 ohiomike wrote:My wife and I are new to this conference (she is the patient)and still have much to learn about noids. She has been on Sando since she was first diagnosed in late 2005 and (based on my understanding) is one of the fortunate few who have experienced a major decrease in liver mets since beginning Sando. She started with the usual regimine of sub Q for several weeks and then went to LAR which she has continued with. We just learned about the pump and are currently looking into switching to that for (presumably) better control & optimization of Octrotide level.My question is this: We have heard from several sources that, eventually, Sando becomes less effective. Is this true? If so, how long does it take for this to happen? Does "less effective" mean less effective in controling carcinoid syndrome, tumor growth, or both? My wife has never had carcinoid syndrome. Am I correct in assuming that the pump should help lesson the likely-hood that the Sando will become less effective by maintaining the optimum level of Octreotide.Thanks very much for any and all input the Group may have.Mike HardySo ..she has "non-functioning carcinoid" but is continuing to take sando lar.  I , recently, was told that I have non-functioning! Have been told to get off sando lar!??  Who is your oncologists?  My concern is that sando lar should be taken regardless of non-functioning carcinoid. ????? I have heard that there is a decrease in effectiveness. My understanding is that Dr. Woltering is looking into this. bill plymouth62 Thu, 22 May 2008 00:00:00 GMT  On 1/22/2008 ohiomike wrote:My wife and I are new to this conference (she is the patient)and still have much to learn about noids. She has been on Sando since she was first diagnosed in late 2005 and (based on my understanding) is one of the fortunate few who have experienced a major decrease in liver mets since beginning Sando. She started with the usual regimine of sub Q for several weeks and then went to LAR which she has continued with. We just learned about the pump and are currently looking into switching to that for (presumably) better control & optimization of Octrotide level.My question is this: We have heard from several sources that, eventually, Sando becomes less effective. Is this true? If so, how long does it take for this to happen? Does "less effective" mean less effective in controling carcinoid syndrome, tumor growth, or both? My wife has never had carcinoid syndrome. Am I correct in assuming that the pump should help lesson the likely-hood that the Sando will become less effective by maintaining the optimum level of Octreotide.Thanks very much for any and all input the Group may have.Mike HardyHi Mike, keep in mind that the LAR/SAR are only controlling the tumor hormones or symptoms or the cancer. Yes the way it's delivered makes a big difference. IV is the best delivery method and to feel better. I know I am living with my husband who has it quite bad. Almost uncontrollable at this stage. He's on about 3000 micrograms a day between the sar and lar. There is room to increase if  needed but it's scary when he had to increase it for he does get side effects from it. what levels are you guys up to? Miss Geri Miss Geri Sun, 08 Jun 2008 00:00:00 GMT  On 1/22/2008 ohiomike wrote:My wife and I are new to this conference (she is the patient)and still have much to learn about noids. She has been on Sando since she was first diagnosed in late 2005 and (based on my understanding) is one of the fortunate few who have experienced a major decrease in liver mets since beginning Sando. She started with the usual regimine of sub Q for several weeks and then went to LAR which she has continued with. We just learned about the pump and are currently looking into switching to that for (presumably) better control & optimization of Octrotide level.My question is this: We have heard from several sources that, eventually, Sando becomes less effective. Is this true? If so, how long does it take for this to happen? Does "less effective" mean less effective in controling carcinoid syndrome, tumor growth, or both? My wife has never had carcinoid syndrome. Am I correct in assuming that the pump should help lesson the likely-hood that the Sando will become less effective by maintaining the optimum level of Octreotide.Thanks very much for any and all input the Group may have.Mike HardyGood Morning Mike:  I too have non-functioning carcinoid. I take 20mg sando lar every 28 days. Yes, it appears that sando is almost 50% less effective than it was several years ago.  Why?  I refer you to Dr. Wolterings report recently.   take care bill plymouth62 Thu, 07 Aug 2008 00:00:00 GMT