CancerCompass message board discussion started by Katsen57 on 3/15/2008 http://www.cancercompass.com/message-board/message/all,22021,0.htm Tue, 07 Oct 2008 00:00:00 GMT Tue, 07 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I am a carcinoid patient since April '07.  I have had the main tumor removed from my cecum and also lymphnodes removed. I had radio frequency ablations done on my liver but there were many smaller tumors left that the surgen could not remove.  now after taking Xyloda and temadar it did absolutely nothing and the tumors on my liver grew and multiplied.  now I am directed to have folfox and avastine administered but while I deal with the insurance, which denied treatment, I was wondering what to expect from this medicine.  I am 41 yrs old and have no children.  I was reading about some of the side effects and it seems to be that it may cause infirtility. Has anyone else experienced this?  Also any other info about this topic will be greatly appreciated.   Katsen    Katsen57 Sat, 15 Mar 2008 00:00:00 GMT Where are you getting treatment - if you dont mind me asking? Live4him Fri, 28 Mar 2008 00:00:00 GMT I have not had folfox /avastin treatment yet.  My insurance has completely denied this type of treatment calling it experimental and/ or unproven.  I would only be approved for Interferon.  You believe that.  Oxford Health Plans is living in the dark ages when it comes to chemotherapy treatment.  It has been 5 months now without treatment so I am having a lawyer interact.  Andrew Cuomo has assigned a staff member of his health care department to investigate my case. (I work in NY).  So that is good news so far.  Katsen57 Fri, 16 May 2008 00:00:00 GMT I am not sure who your doctors are but one of the top carcinoid specialist is in NYC - Dr. Warner.  If you have not already go to the carcinoid.org website and there is a wealth of information in general, but also under the physician area you will find doctors that specialize in carcinoid - including Dr. Warner.  Best of Wishes to you and I understand the frustration of insurances stating everything is experimental/oinvestigational. Live4him Wed, 21 May 2008 00:00:00 GMT  On 5/21/2008 Live4him wrote:I am not sure who your doctors are but one of the top carcinoid specialist is in NYC - Dr. Warner.  If you have not already go to the carcinoid.org website and there is a wealth of information in general, but also under the physician area you will find doctors that specialize in carcinoid - including Dr. Warner.  Best of Wishes to you and I understand the frustration of insurances stating everything is experimental/oinvestigational. I am being treated by Dr. Warner. He was the first doctor I went to when I was diagnosed.  When the insurance co. denied the meds He responded by saying I should consult a lawyer which is what I did.  We have gotten a response from Andrew Cuomo, Attorney General of NY. He appearently is pro active about getting Insurance companies to  stop the beauracracy about approvals, etc. I was just wondering if I should continue to persue the meds or if I should try to get on a clinical trial.  thanks for your help. Katsen57 Wed, 21 May 2008 00:00:00 GMT  On 5/16/2008 Katsen57 wrote:I have not had folfox /avastin treatment yet.  My insurance has completely denied this type of treatment calling it experimental and/ or unproven.  I would only be approved for Interferon.  You believe that.  Oxford Health Plans is living in the dark ages when it comes to chemotherapy treatment.  It has been 5 months now without treatment so I am having a lawyer interact.  Andrew Cuomo has assigned a staff member of his health care department to investigate my case. (I work in NY).  So that is good news so far. are you a veteran. they will help you. i have had cancer for 2 yearrs. they are just moving me up to folfox next week. so be patient. but call your va rep and him help you. many of the va's have a place for you to stay if you live out of town. i hope this helps you. may god help you in all your needs. LOVE JOHN john9129 Fri, 26 Sep 2008 00:00:00 GMT