Forum Replies Created
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- March 28, 2012 at 2:29 am
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
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- March 28, 2012 at 2:29 am
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
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- March 28, 2012 at 2:29 am
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
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- July 24, 2011 at 2:09 am
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
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- July 24, 2011 at 2:09 am
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
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- January 1, 2011 at 1:00 pm
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
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- January 1, 2011 at 1:00 pm
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
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- December 7, 2010 at 7:01 pm
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
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- December 7, 2010 at 7:01 pm
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
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- December 7, 2010 at 7:01 pm
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
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- December 7, 2010 at 7:01 pm
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
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- August 17, 2010 at 11:12 pm
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
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- August 17, 2010 at 11:12 pm
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
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