CancerCompass message board discussion started by Laven on 5/15/2007 http://www.cancercompass.com/message-board/message/all,12101,0.htm Wed, 20 Aug 2008 00:00:00 GMT Wed, 20 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ dear deets,My husband has advanced HCC, his oncologist suggeted sorafenib one month ago, but asked him to wait without any treatment for some'data release' on this medicine, and yesterday when we went to see the doc, he told us to wait for another 2 to 3 weeks, my god!! imagine how fustrating it is for us. can you tell me where are you seeing  your doctor, or where can we get a doctor who would prescribe this medicine? thanks I also saw some clinical trial testing sorafenib combined with doxorubicin, are you on single medicine?  Laven Tue, 15 May 2007 00:00:00 GMT HelloI am on nexavar. I see Dr Le Marbre in Waukesha Wisconsin USA.I beleive Nexavar is going to be in  medical news in June. But I did get this ok'd with my insurance. This is very new to liver cancer but has shown great results in studies.Was also refered to go this route from Dr Allen at Boston Mass. General.Waiting is so frustrating, I found the more noise you make the get going quicker with treatment. I would call your doctor and question about Nexavar.On website it only mentions kidney cancer.Take CareDeets      Deets Tue, 15 May 2007 00:00:00 GMT thanksbut it's too far away for us, we are in ca, all we could do seems to be waiting, as even we find another doc, it would take us 2 weeks or more to get the appointment.God bless you, my friend  Laven Tue, 15 May 2007 00:00:00 GMT Re Sorafenib/NevavarMy best friend is on Nexavar now for 11 weeks.  She is having positive results.In the phase 3 trials for advanced HCC that ended Feb 12, 2007 the results were impressive.  Trials were stopped earily so that the group on sugar pills could start taking Nexavar.  In June at a national cancer conference there will be an up date on the phase 3 results.  Go to your search engine and type in Nexavar Liver there are at least 20 articles on the phase 3 trial results. Now get on Nevavar right away!  The sooner the better!  Get your doctor to approve now or find one that will.  Print the phase 3 results.  In the phase 3 study.  80% of these that started on Nexavar had positive results.  It appears that after 12 weeks when the phase 3 trial was stopped, 50% of those that were on sugar pills for 12 weeks and started Nexavar had positive results.  Nexavar is on fast track for FDA approval for liver cancer Do note:  Nexavar is not a cure.  It can shrink and stop new growth.Wish you the best and please keep us posted.  We care, ED   Seeking Information Thu, 17 May 2007 00:00:00 GMT Hi thereMy father was on sorafenib but couldnt cope and died within three weeks of taking it.His tumor was 10cm big maybe that had something to do with it we dont know.This is an awful cancer and after seeing eight liver specialists, gastrointeroligist and oncologists nohing could help my beautiful dad.Never sick and then out of nowhere this comes and tkes him so quickly its not fair.I am having such a hard time dealing with my dads death. I cant wait to see the publication on sorafenib in june it will be interesting to see if they have been as successful as we all have heard.  Peters Daughter Thu, 17 May 2007 00:00:00 GMT what are your firend's positive results? Laven Fri, 18 May 2007 00:00:00 GMT  On 5/15/2007 Deets wrote:HelloI am on nexavar. I see Dr Le Marbre in Waukesha Wisconsin USA.I beleive Nexavar is going to be in  medical news in June. But I did get this ok'd with my insurance. This is very new to liver cancer but has shown great results in studies.Was also refered to go this route from Dr Allen at Boston Mass. General.Waiting is so frustrating, I found the more noise you make the get going quicker with treatment. I would call your doctor and question about Nexavar.On website it only mentions kidney cancer.Take CareDeets     are there any results after taking sorafenib? Laven Fri, 18 May 2007 00:00:00 GMT  On 5/17/2007 Seeking Information wrote:Re Sorafenib/NevavarMy best friend is on Nexavar now for 11 weeks.  She is having positive results.In the phase 3 trials for advanced HCC that ended Feb 12, 2007 the results were impressive.  Trials were stopped earily so that the group on sugar pills could start taking Nexavar.  In June at a national cancer conference there will be an up date on the phase 3 results.  Go to your search engine and type in Nexavar Liver there are at least 20 articles on the phase 3 trial results. Now get on Nevavar right away!  The sooner the better!  Get your doctor to approve now or find one that will.  Print the phase 3 results.  In the phase 3 study.  80% of these that started on Nexavar had positive results.  It appears that after 12 weeks when the phase 3 trial was stopped, 50% of those that were on sugar pills for 12 weeks and started Nexavar had positive results.  Nexavar is on fast track for FDA approval for liver cancer Do note:  Nexavar is not a cure.  It can shrink and stop new growth.Wish you the best and please keep us posted.  We care, ED  what are your friend's positive results? Laven Fri, 18 May 2007 00:00:00 GMT The positive results are:  Two weeks on Nexavar and 6 weeks since prior scan, doctor stated "the x-rays show tumors are srinking"...."the drug is active"?   Weekly fluid drain of lower stomach went from over 6 liters every 5-7 days pre-Nexavar to about 6 liters every 9-10 days.  Color of fluid pre-Nexavar was a dark grape juice color then it went to a ruby red cranberry color, then to a beer color and last Tuesday still a beer color but clearer.   Other effects:  Humor and smiles returning, able to walk around the block with out difficultly.  Able to go up and down stairs without alot of effort. Able to do limited shopping.  She still needs lots of rest and it's still a long road to really feeling good but the worst day now is much better then the best day a month and a half ago.  Gained back about 12 pounds, and eating much better.  Next week is the next body scan. It will be after 8 or 9 weeks on Nexavar.  I will post the results.  I, to have found so little information on the results of Nexavar.  My friend's doctor has patients in the trails and he told me he can't really say anything, but the cat got out of the bag, June results will be good.  Please note that one year ago, stage 4 HCC meant you had just weeks to months to live, now if you can stand the side effects, and you get started soon enough most patients can at least keep the cancer at bay and some have seen impressive scrinkage.   With a seach engine type in Nexavar Liver Trial look for the graph of the phase one results.  The document is 18 pages long, but all the data is there.     Seeking Information Fri, 18 May 2007 00:00:00 GMT  On 5/18/2007 Seeking Information wrote:The positive results are:  Two weeks on Nexavar and 6 weeks since prior scan, doctor stated "the x-rays show tumors are srinking"...."the drug is active"?   Weekly fluid drain of lower stomach went from over 6 liters every 5-7 days pre-Nexavar to about 6 liters every 9-10 days.  Color of fluid pre-Nexavar was a dark grape juice color then it went to a ruby red cranberry color, then to a beer color and last Tuesday still a beer color but clearer.   Other effects:  Humor and smiles returning, able to walk around the block with out difficultly.  Able to go up and down stairs without alot of effort. Able to do limited shopping.  She still needs lots of rest and it's still a long road to really feeling good but the worst day now is much better then the best day a month and a half ago.  Gained back about 12 pounds, and eating much better.  Next week is the next body scan. It will be after 8 or 9 weeks on Nexavar.  I will post the results.  I, to have found so little information on the results of Nexavar.  My friend's doctor has patients in the trails and he told me he can't really say anything, but the cat got out of the bag, June results will be good.  Please note that one year ago, stage 4 HCC meant you had just weeks to months to live, now if you can stand the side effects, and you get started soon enough most patients can at least keep the cancer at bay and some have seen impressive scrinkage.   With a seach engine type in Nexavar Liver Trial look for the graph of the phase one results.  The document is 18 pages long, but all the data is there.    so happy for your friend. we tried to argue with my husband's doctor, but no use. we will have to find another one in the next week.thanks and hope your friend's CT scan will bring great news. Laven Sat, 19 May 2007 00:00:00 GMT Thank you for sharing this positive news re: Nexavar.  My father just started today.  It's a small ray of hope in an otherwise nightmarish situation.  We're just hoping for some quality time for him at this point.  He was always healthy and 8 months ago was diagnosed with liver cancer.  This is such a shocking and devastating time for all of us.  I've just discovered this site and finally feel as if I'm getting some real answers. Thank you all and I wish you all the best. Swim Dog Wed, 23 May 2007 00:00:00 GMT HelloI had my 8 week check up after taking Nexavar/sorafenib for 8 week. Had good results alphafeta number went down by 1/4 tumors in lungs show shrinkage and ones in liver did not change. I believe this is all good and very excited for continued good results.All the best to all. Take care!Deets  Deets Wed, 23 May 2007 00:00:00 GMT