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Hi Jerry Welcome back. I  heard about your accident early on. Hope you are feeling well.I am glad to hear your disease has remained stable.Are you still on Gleevec. I  tested negative for C-kit. I am still on the XL-184 trial. I had to have a dose reduction twice due to side effects. I am interested in hearing more about this Dasantib trial. Where is it being offered and do you have to be positive for C-Kit? Is your friend stage IV. My e-mail address is [email protected].

Hi Jerry Welcome back. I  heard about your accident early on. Hope you are feeling well.I am glad to hear your disease has remained stable.Are you still on Gleevec. I  tested negative for C-kit. I am still on the XL-184 trial. I had to have a dose reduction twice due to side effects. I am interested in hearing more about this Dasantib trial. Where is it being offered and do you have to be positive for C-Kit? Is your friend stage IV. My e-mail address is [email protected].

Hi Sam Sorry about getting back to you so late. I had an anal melanoma removed in 2008. Shortly thereafter had mets to the liver and groin, I did 2 rounds of  IL-2 and 27 weeks of chemo. No good results. I have been on a Yale  clinical trial of XL-184 for about six months now, no new growth. Stable. Hopes this helps you. Good luck.

Hi Sam Sorry about getting back to you so late. I had an anal melanoma removed in 2008. Shortly thereafter had mets to the liver and groin, I did 2 rounds of  IL-2 and 27 weeks of chemo. No good results. I have been on a Yale  clinical trial of XL-184 for about six months now, no new growth. Stable. Hopes this helps you. Good luck.

I am on a clinical trial at Yale.I don't know anything about the long term results of this medication. I can tell you I had an anal melanoma removed and now have disease in my liver and in my groin. In the 4 months on this trial the tumor in my groin that was the size of a golf ball is now the size of a marble. I felt reduction in 2 weeks on the med. The ones in my liver are also smaller. I had scans 6 weeks ago and they took an average of the three largest tumors and told me I had a 15% reduction in tumor size. I will be scanned again next week. I will tell you the side effects of this med for me are diarrrhea and fatigue. I have lost some weight and don't have much of an appetite. Some folks have had to come off the study due to side effects. I will post scan results next week for you. I think this trial is too new to know any of the long term effects or results. I know there are other studies but are not familiar with them. Where are you being treated? You are right about no standard treatment so it gets very confusing when trying to figure out treatment. It is helpful to hear other stories and treatment results although I do believe that the major cancer centers are all doing the same treatments.My best wishes to you finding one that works for you. 

I am on a clinical trial at Yale.I don't know anything about the long term results of this medication. I can tell you I had an anal melanoma removed and now have disease in my liver and in my groin. In the 4 months on this trial the tumor in my groin that was the size of a golf ball is now the size of a marble. I felt reduction in 2 weeks on the med. The ones in my liver are also smaller. I had scans 6 weeks ago and they took an average of the three largest tumors and told me I had a 15% reduction in tumor size. I will be scanned again next week. I will tell you the side effects of this med for me are diarrrhea and fatigue. I have lost some weight and don't have much of an appetite. Some folks have had to come off the study due to side effects. I will post scan results next week for you. I think this trial is too new to know any of the long term effects or results. I know there are other studies but are not familiar with them. Where are you being treated? You are right about no standard treatment so it gets very confusing when trying to figure out treatment. It is helpful to hear other stories and treatment results although I do believe that the major cancer centers are all doing the same treatments.My best wishes to you finding one that works for you. 

Hi Valerie Happy to hear Phil is NED and I pray that will continue. They found the mets on my scans a few months after the original surgery.I have a CT scan every 6 weeks and both CT and Mri of the brain every 12 weeks. Nothing new since the initial diagnosis. Two years,  I feel it is under control right now and the trial is working for me . The side effects are not really bad so I will continue. For life they tell me a pill every day. I have a scan soon and hope they tell me they are still shrinking.  Do you know the size of his tumor ? I continue to keep you in my prayers. Roseann

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Hi Valerie Happy to hear Phil is NED and I pray that will continue. They found the mets on my scans a few months after the original surgery.I have a CT scan every 6 weeks and both CT and Mri of the brain every 12 weeks. Nothing new since the initial diagnosis. Two years,  I feel it is under control right now and the trial is working for me . The side effects are not really bad so I will continue. For life they tell me a pill every day. I have a scan soon and hope they tell me they are still shrinking.  Do you know the size of his tumor ? I continue to keep you in my prayers. Roseann

[email protected]