CancerCompass message board discussion started by Doreen2 on 5/27/2008 http://www.cancercompass.com/message-board/message/all,24412,0.htm Thu, 20 Nov 2008 00:00:00 GMT Thu, 20 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ HiI had stage 1 lung cancer and now stage 4. I'm on tarceva and responded well the first month with the lung tumor gone but have in the bone, liver and other areas. The doctors performs ct cans vs. petscan because he says there not accurate and if it responds in one area then it "should" respond in all. I still want a petscan but does not recommend.  Any advice.  Doreen2 Tue, 27 May 2008 00:00:00 GMT  On 5/27/2008 Doreen2 wrote:HiI had stage 1 lung cancer and now stage 4. I'm on tarceva and responded well the first month with the lung tumor gone but have in the bone, liver and other areas. The doctors performs ct cans vs. petscan because he says there not accurate and if it responds in one area then it "should" respond in all. I still want a petscan but does not recommend.  Any advice. I agree with you.   Although they do give some false positives, they are still quite good because you can determine if the cancer is active or not.  My oncologist orders one every 3 months.  Just because he thinks they "should" respond to all, that doesn't mean that they will respond to each area equally and concurrently.   The doctor works for you, not the other way around.  Follow your feelings.   I would insist on the PET scan.    Chessie Tue, 27 May 2008 00:00:00 GMT  On 5/27/2008 Chessie wrote: On 5/27/2008 Doreen2 wrote:HiI had stage 1 lung cancer and now stage 4. I'm on tarceva and responded well the first month with the lung tumor gone but have in the bone, liver and other areas. The doctors performs ct cans vs. petscan because he says there not accurate and if it responds in one area then it "should" respond in all. I still want a petscan but does not recommend.  Any advice. I agree with you.   Although they do give some false positives, they are still quite good because you can determine if the cancer is active or not.  My oncologist orders one every 3 months.  Just because he thinks they "should" respond to all, that doesn't mean that they will respond to each area equally and concurrently.   The doctor works for you, not the other way around.  Follow your feelings.   I would insist on the PET scan.    thanks- so true, the doctor works for us.How long have you been on tarceva? Did the doctor change your life expectancy due to the new information? I think the online data is out dated and just stay postive and thank god for the miracle. FYI: I went to sloan kettering for a second opinion and a newer drug is called XL647 if we stop responding to tarceva. Doreen2 Tue, 27 May 2008 00:00:00 GMT My dad has advanced small cell lung cancer which has spead to his liver, lymph and skin.  He has had 3 rounds of chemo and the doctors have stoped this as they said that although the lung tumor has srunk slightly the liver and lymph and increased (the docs are not always right and treatment does not act the same for different tumors in different places, I would insist on another scan.)  Have you heard of anyone taking tarceva for small lung cell cancer or do you know of any other treatment that would be usefull. The doc have given up and dad seams well.Thanks   Siobhan1 Tue, 27 May 2008 00:00:00 GMT  On 5/27/2008 Doreen2 wrote: On 5/27/2008 Chessie wrote: On 5/27/2008 Doreen2 wrote:HiI had stage 1 lung cancer and now stage 4. I'm on tarceva and responded well the first month with the lung tumor gone but have in the bone, liver and other areas. The doctors performs ct cans vs. petscan because he says there not accurate and if it responds in one area then it "should" respond in all. I still want a petscan but does not recommend.  Any advice. I agree with you.   Although they do give some false positives, they are still quite good because you can determine if the cancer is active or not.  My oncologist orders one every 3 months.  Just because he thinks they "should" respond to all, that doesn't mean that they will respond to each area equally and concurrently.   The doctor works for you, not the other way around.  Follow your feelings.   I would insist on the PET scan.    thanks- so true, the doctor works for us.How long have you been on tarceva? Did the doctor change your life expectancy due to the new information? I think the online data is out dated and just stay postive and thank god for the miracle. FYI: I went to sloan kettering for a second opinion and a newer drug is called XL647 if we stop responding to tarceva.Hi Doreen, I sent you a private reply too.  I know about the XL647.  There is another new one in final trials due out later this year called Zactima.  I'm keeping an eye on that one in case Tarceva fails.  I've been on it 21 months.And you are right about the statistics.  They are so outdated.  They do not include any of the newer treatment results.My oncologist said he wouldn't even try and predict a time span now since I have already gone far past his expectations.  Originally given me 6-12 months tops.  Fooled him good!   Now he just says I don't know what you are doing but keep doing it.     Chessie Tue, 27 May 2008 00:00:00 GMT