Guest guest Posted December 10, 2004 Report Share Posted December 10, 2004 Hi Ric, Glad to see you back. Have often thought of you. My clinical trial was a bust. I went down there and was prepared to start. Rented a apt. for a month (to be extended if I needed to.) Had a friend fly in from Alabama to be with me for the first month. Long story short, day before I was suppose to start the trial, coordinator called and said " You have a high value on one of your test " . I asked what test was that and he said the Alpha Fetoprotein. I was like how high? he said well higher than the last time you took it down here. He gave me no numbers or anything. I asked him well where do we go from here? He said well I will talk to the doctor and he might want to do a ultrasound on you or possibly another bloodtest. He was supposed to do that that afternoon. 3 weeks later after numerous calls from me, I finally get a answer. Come back in 6 weeks for another bloodtest. At that point I was angry, I had spent all this money thinking that I was getting into the clinical trial. I was told that I would start the treatment on Dec. 17, I rent a apt, paid the rent for a month. Made the trip from Broken Arrow, Okla to Austin, Tx. Missed Thanksgiving with my family. Given bad news that my Alpha Fetoprotein was high. (Which can be in indicator of Liver cancer or cirrohis or even recovery from hepatitis.) I was like, BS on this. I am going home. I have a GI doctor at home, who I trust. And I am going to see him, have him rerun the test. And he will find out why this test is high. I am determined to take the best care of me. And my doctor knows that. I am a advocate for my own health care. So I have a appt on the 22th of Dec. And I am going to find out what can or cannot be done. Ric you know me, I am a fighter and I intend to fight this tooth and nail. Love Janet Hobbs wrote: I'm back for awhile to check-in. Wondering about Doc's trial. How's it going? Hi to anne. Hi to all. As always I'm, It's a pleasure having you join in our conversations. We hope you have found the support you need with us. If you are using email for your posts, for easy access to our group, just click the link-- http://groups.yahoo.com/group/Hepatitis_C_Central/ Happy Posting Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2004 Report Share Posted December 10, 2004 > Hi Ric, > Glad to see you back. Have often thought of you. > My clinical trial was a bust. Hi Janet. well that sucks the big one. they wouldn't even tell you what it was?? Geeeez. My old gastro-the one I fired- once told me that my AFP would have to be in the thousands before he became concerned. but any upward movement should be a concern. Right now mine is high too, but only slightly. A CT Scan showed 4 new spots in my liver. got sent for an MRI and they determined that it's only cysts..so I'm good. Stay strong Dear. A breakthru will come. Thanks FishRot. good to hear from you too. Now , where is the setting That allows me to reply without sending all the previous info? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2004 Report Share Posted December 10, 2004 Hiya Ric!!! So glad to see you again! How's things going for you? I have been the groups silent observer for quite a while now. The ol' depression monsta has reared it's ugly head with a vengence but I'm plodding along and won't let it defeat me. Janet, I'm so sorry things didn't work out for you with this damned trial. They're a bunch of lousy bastards IMO! (((HUGS))) to all anne Re: hi Group Hi Ric, Glad to see you back. Have often thought of you. My clinical trial was a bust. I went down there and was prepared to start. Rented a apt. for a month (to be extended if I needed to.) Had a friend fly in from Alabama to be with me for the first month. Long story short, day before I was suppose to start the trial, coordinator called and said " You have a high value on one of your test " . I asked what test was that and he said the Alpha Fetoprotein. I was like how high? he said well higher than the last time you took it down here. He gave me no numbers or anything. I asked him well where do we go from here? He said well I will talk to the doctor and he might want to do a ultrasound on you or possibly another bloodtest. He was supposed to do that that afternoon. 3 weeks later after numerous calls from me, I finally get a answer. Come back in 6 weeks for another bloodtest. At that point I was angry, I had spent all this money thinking that I was getting into the clinical trial. I was told that I would start the treatment on Dec. 17, I rent a apt, paid the rent for a month. Made the trip from Broken Arrow, Okla to Austin, Tx. Missed Thanksgiving with my family. Given bad news that my Alpha Fetoprotein was high. (Which can be in indicator of Liver cancer or cirrohis or even recovery from hepatitis.) I was like, BS on this. I am going home. I have a GI doctor at home, who I trust. And I am going to see him, have him rerun the test. And he will find out why this test is high. I am determined to take the best care of me. And my doctor knows that. I am a advocate for my own health care. So I have a appt on the 22th of Dec. And I am going to find out what can or cannot be done. Ric you know me, I am a fighter and I intend to fight this tooth and nail. Love Janet Hobbs wrote: I'm back for awhile to check-in. Wondering about Doc's trial. How's it going? Hi to anne. Hi to all. As always I'm, It's a pleasure having you join in our conversations. We hope you have found the support you need with us. If you are using email for your posts, for easy access to our group, just click the link-- http://groups.yahoo.com/group/Hepatitis_C_Central/ Happy Posting Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2004 Report Share Posted December 11, 2004 anne, You have been missed here. I knew something was going on with you. But given what you have been through, I knew that you would come back when your heart healed a little. anne you know me, I am not one to accept the first answer given to me, I am going to research and then find the best possible solution for me. Hee Hee I am a pain in the arse sometimes to live with because of my stubborness. But somehow these folks here at my home still love me. Love Janet anne wrote: Hiya Ric!!! So glad to see you again! How's things going for you? I have been the groups silent observer for quite a while now. The ol' depression monsta has reared it's ugly head with a vengence but I'm plodding along and won't let it defeat me. Janet, I'm so sorry things didn't work out for you with this damned trial. They're a bunch of lousy bastards IMO! (((HUGS))) to all anne Re: hi Group Hi Ric, Glad to see you back. Have often thought of you. My clinical trial was a bust. I went down there and was prepared to start. Rented a apt. for a month (to be extended if I needed to.) Had a friend fly in from Alabama to be with me for the first month. Long story short, day before I was suppose to start the trial, coordinator called and said " You have a high value on one of your test " . I asked what test was that and he said the Alpha Fetoprotein. I was like how high? he said well higher than the last time you took it down here. He gave me no numbers or anything. I asked him well where do we go from here? He said well I will talk to the doctor and he might want to do a ultrasound on you or possibly another bloodtest. He was supposed to do that that afternoon. 3 weeks later after numerous calls from me, I finally get a answer. Come back in 6 weeks for another bloodtest. At that point I was angry, I had spent all this money thinking that I was getting into the clinical trial. I was told that I would start the treatment on Dec. 17, I rent a apt, paid the rent for a month. Made the trip from Broken Arrow, Okla to Austin, Tx. Missed Thanksgiving with my family. Given bad news that my Alpha Fetoprotein was high. (Which can be in indicator of Liver cancer or cirrohis or even recovery from hepatitis.) I was like, BS on this. I am going home. I have a GI doctor at home, who I trust. And I am going to see him, have him rerun the test. And he will find out why this test is high. I am determined to take the best care of me. And my doctor knows that. I am a advocate for my own health care. So I have a appt on the 22th of Dec. And I am going to find out what can or cannot be done. Ric you know me, I am a fighter and I intend to fight this tooth and nail. Love Janet Hobbs wrote: I'm back for awhile to check-in. Wondering about Doc's trial. How's it going? Hi to anne. Hi to all. As always I'm, It's a pleasure having you join in our conversations. We hope you have found the support you need with us. If you are using email for your posts, for easy access to our group, just click the link-- http://groups.yahoo.com/group/Hepatitis_C_Central/ Happy Posting Quote Link to comment Share on other sites More sharing options...
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