ed_CT

Hi Dave,

I haven't been active on the board for quite a while but happened to check in and see your post.   I went Stage IV back in July 2005. METs in my Liver and neck.  The neck tumor was removed.    I went on a trial of Temodar and Nexavar  with the MET  still in my liver and have been NED since about 4 months later.   The trial was a phase II trial that was cancelled because it didn't seem to be working for most.  I was on the combination for 2 years and Nexavar alone for about another 2 more before they finally took me off anything.   Not sure why it worked for me.   I also took Turmeric supplements and went on an "almost Vegan diet"   (I ate some fish).   I stopped the diet about 4 years ago.

I'd look for a trial where they are combining things with the Temodar.

Best wishes

Ed

Hi Dave,

I haven't been active on the board for quite a while but happened to check in and see your post.   I went Stage IV back in July 2005. METs in my Liver and neck.  The neck tumor was removed.    I went on a trial of Temodar and Nexavar  with the MET  still in my liver and have been NED since about 4 months later.   The trial was a phase II trial that was cancelled because it didn't seem to be working for most.  I was on the combination for 2 years and Nexavar alone for about another 2 more before they finally took me off anything.   Not sure why it worked for me.   I also took Turmeric supplements and went on an "almost Vegan diet"   (I ate some fish).   I stopped the diet about 4 years ago.

I'd look for a trial where they are combining things with the Temodar.

Best wishes

Ed

Hi Dave,

I haven't been active on the board for quite a while but happened to check in and see your post.   I went Stage IV back in July 2005. METs in my Liver and neck.  The neck tumor was removed.    I went on a trial of Temodar and Nexavar  with the MET  still in my liver and have been NED since about 4 months later.   The trial was a phase II trial that was cancelled because it didn't seem to be working for most.  I was on the combination for 2 years and Nexavar alone for about another 2 more before they finally took me off anything.   Not sure why it worked for me.   I also took Turmeric supplements and went on an "almost Vegan diet"   (I ate some fish).   I stopped the diet about 4 years ago.

I'd look for a trial where they are combining things with the Temodar.

Best wishes

Ed

Hello,

I was Stage IV in July 2005.   I went on a combination of Temodar and Nexavar and had very good luck.  I am currently NED.  Unfortunately I was the only one of 147 in the trial that had lasting results.  However,  I know that there have been other people who have benefited from Temodar alone.   It is a drug that can work on Brain mets – crosses the blood brain barrier- and the side effects were very tollerable.

Best wishes to you

Ed

Hello,

I was Stage IV in July 2005.   I went on a combination of Temodar and Nexavar and had very good luck.  I am currently NED.  Unfortunately I was the only one of 147 in the trial that had lasting results.  However,  I know that there have been other people who have benefited from Temodar alone.   It is a drug that can work on Brain mets – crosses the blood brain barrier- and the side effects were very tollerable.

Best wishes to you

Ed

I went Stage IV in July 2005. (liver  and Neck met)   I went on a trial of Nexavar /Temodar and was put on Scans every two months which lasted for about a year.   Then I got them to switch to every 3 months during the second year when it was pretty clear that something was working (I was NED by then).  After two years I stopped the Temodar and just took the Nexavar.  I can't remember exactly when but pretty soon after I was able to get my onc to agree to 4 month scans and then after about 3 1/2 years I got go  6 months. Last March I had a scan which was at a 9 month interval.  This was 3 months after I finally stopped all chemo (the Nexavar stopped).  After this my oncs wanted to be conservative and go back to a 6 month interval.   My last scan in Oct 2010 was clear but now my onc in New Haven wants to do another one in April (again 6 months)      I have an appointment this month with my other onc in Philadelphia and I'll ask her what she thinks. I'm pretty sure she'll be conservative too and opt for 6 months.   I'm starting to worry that all this scanning will lead to other problems.

Best wishes

Ed

I went Stage IV in July 2005. (liver  and Neck met)   I went on a trial of Nexavar /Temodar and was put on Scans every two months which lasted for about a year.   Then I got them to switch to every 3 months during the second year when it was pretty clear that something was working (I was NED by then).  After two years I stopped the Temodar and just took the Nexavar.  I can't remember exactly when but pretty soon after I was able to get my onc to agree to 4 month scans and then after about 3 1/2 years I got go  6 months. Last March I had a scan which was at a 9 month interval.  This was 3 months after I finally stopped all chemo (the Nexavar stopped).  After this my oncs wanted to be conservative and go back to a 6 month interval.   My last scan in Oct 2010 was clear but now my onc in New Haven wants to do another one in April (again 6 months)      I have an appointment this month with my other onc in Philadelphia and I'll ask her what she thinks. I'm pretty sure she'll be conservative too and opt for 6 months.   I'm starting to worry that all this scanning will lead to other problems.

Best wishes

Ed

Here I am still typing after over 5 years since going stage IV.   I did a Nexavar/Temodar trial in 2005.   It worked well for me – unfortunately not the silver bullet for most others.  However – it does point out that there is hope and keep looking for the latest clinical trials.

Ed

Here I am still typing after over 5 years since going stage IV.   I did a Nexavar/Temodar trial in 2005.   It worked well for me – unfortunately not the silver bullet for most others.  However – it does point out that there is hope and keep looking for the latest clinical trials.

Ed

Here I am still typing after over 5 years since going stage IV.   I did a Nexavar/Temodar trial in 2005.   It worked well for me – unfortunately not the silver bullet for most others.  However – it does point out that there is hope and keep looking for the latest clinical trials.

Ed

Here I am still typing after over 5 years since going stage IV.   I did a Nexavar/Temodar trial in 2005.   It worked well for me – unfortunately not the silver bullet for most others.  However – it does point out that there is hope and keep looking for the latest clinical trials.

Ed

I went Stage IV in 2005 and here I am now NED in 2010.   There is hope.   Find a good DR. at a research institution and pick a clinical trial that fits you.  I did Nexavar/Temodar.  Although it didn't turn out to be a big winner for most – it did work for me

Best wishes

Ed

I went Stage IV in 2005 and here I am now NED in 2010.   There is hope.   Find a good DR. at a research institution and pick a clinical trial that fits you.  I did Nexavar/Temodar.  Although it didn't turn out to be a big winner for most – it did work for me

Best wishes

Ed