Guest guest Posted February 3, 2004 Report Share Posted February 3, 2004 I live in Miami,the oncology group has an Md. who was a part of the original trial. It was a blind study. You did not know if you were receiving the Veg F as it was called or a placebo. Six months into it(in conjunction with 5FU+LV+Camptosar a scan revealed only pinpoints in my liver.) The study was opened,and I was told yes I was receiving the study med. I received it for six more months. It worked for about 10 weeks and then the tumors progressed to both lobes. I was started on Oxy+5FU+ LV and the Avastin. This was in Nov. I have lost weight,had hair thinning,but no lash or brow loss. The doseages were reduced because I had a rather severe reaction. I will be 73 in March,first dx May of 1999. My onc said,there was no cure but he thought it could be controlled. Avastin is presetly being used in pancreatic and other cancer treatments. The protien in the urine has to be tested,my hemogl.is good my rbc a little low and I receive the treatments every 20 days. It takes about 3 and 1/2 hours,then I go home with the pump for approx 46 hours(I have a double port) and return to have it disconnected. There is a middle visit for cbc counts and if they are good I repeat the series again. Yes I have had tingling in hand and feet, a slight rah that lasts about two days and I feel lousy for 4 to 5 days afterwards but gradually it goes away. I do get premeds before treatmet and I follow a brat or white diet for 4/5 days or wish I had. I am generally in good health,I have had elevated B/p and Cholesterol but it is controlled by medication(chemically induced) I haved learned to pace myself and the only bad part now is a lower back pain that comes and goes. I don't like to take to much Vioxx because I get a little dizzy. Two tylenol help and I have found if I move and stretch a little it helps. The study originated in Broward(neighboring) county but the oncologist had an office and a practice there. About 15 started,now they are using it in other cancer studies. To date I have not had radiation,liver resection or other surgery. I do have skin cancer,it is clear right now I had a cyst removed about 14 months ago. One port actually burst through my skin. One disadvantage is the port sites are subject to infection and sometimes I feel like I ache all over(like flu) after the Avastin but that disappears. It did work,when the chemo was stopped,the effects lasted for a period of time and blood tests and a C.A.T. revealed the new tunors. I had both a P.E.T and a C.A.T. in mid Dec. Mixed results. But I have had four treatments of the Oxy/5FU/LV/Avastin since then and one previous. We did discuss Xeloda but the oncologist wanted me to finsh the Oxy before he tried something new, They pay for the medication(Avastin) but not the scans or x-rays. Some insurances will not cover study meds. Sometimes reactions differ in men and women and it appears that if you have received radiation there is a different protocol. We wrote to the company, every 6 week or so they uprgade their programs and we have to sign new consent forms. There are as far as I am aware six studies presently being conducted with Avastin. That's about all I can think to say. It may definitely hold hope and there are a number of similar products on or about to be in the marketplace soon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2004 Report Share Posted February 3, 2004 I live in Miami,the oncology group has an Md. who was a part of the original trial. It was a blind study. You did not know if you were receiving the Veg F as it was called or a placebo. Six months into it(in conjunction with 5FU+LV+Camptosar a scan revealed only pinpoints in my liver.) The study was opened,and I was told yes I was receiving the study med. I received it for six more months. It worked for about 10 weeks and then the tumors progressed to both lobes. I was started on Oxy+5FU+ LV and the Avastin. This was in Nov. I have lost weight,had hair thinning,but no lash or brow loss. The doseages were reduced because I had a rather severe reaction. I will be 73 in March,first dx May of 1999. My onc said,there was no cure but he thought it could be controlled. Avastin is presetly being used in pancreatic and other cancer treatments. The protien in the urine has to be tested,my hemogl.is good my rbc a little low and I receive the treatments every 20 days. It takes about 3 and 1/2 hours,then I go home with the pump for approx 46 hours(I have a double port) and return to have it disconnected. There is a middle visit for cbc counts and if they are good I repeat the series again. Yes I have had tingling in hand and feet, a slight rah that lasts about two days and I feel lousy for 4 to 5 days afterwards but gradually it goes away. I do get premeds before treatmet and I follow a brat or white diet for 4/5 days or wish I had. I am generally in good health,I have had elevated B/p and Cholesterol but it is controlled by medication(chemically induced) I haved learned to pace myself and the only bad part now is a lower back pain that comes and goes. I don't like to take to much Vioxx because I get a little dizzy. Two tylenol help and I have found if I move and stretch a little it helps. The study originated in Broward(neighboring) county but the oncologist had an office and a practice there. About 15 started,now they are using it in other cancer studies. To date I have not had radiation,liver resection or other surgery. I do have skin cancer,it is clear right now I had a cyst removed about 14 months ago. One port actually burst through my skin. One disadvantage is the port sites are subject to infection and sometimes I feel like I ache all over(like flu) after the Avastin but that disappears. It did work,when the chemo was stopped,the effects lasted for a period of time and blood tests and a C.A.T. revealed the new tunors. I had both a P.E.T and a C.A.T. in mid Dec. Mixed results. But I have had four treatments of the Oxy/5FU/LV/Avastin since then and one previous. We did discuss Xeloda but the oncologist wanted me to finsh the Oxy before he tried something new, They pay for the medication(Avastin) but not the scans or x-rays. Some insurances will not cover study meds. Sometimes reactions differ in men and women and it appears that if you have received radiation there is a different protocol. We wrote to the company, every 6 week or so they uprgade their programs and we have to sign new consent forms. There are as far as I am aware six studies presently being conducted with Avastin. That's about all I can think to say. It may definitely hold hope and there are a number of similar products on or about to be in the marketplace soon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2004 Report Share Posted February 3, 2004 I live in Miami,the oncology group has an Md. who was a part of the original trial. It was a blind study. You did not know if you were receiving the Veg F as it was called or a placebo. Six months into it(in conjunction with 5FU+LV+Camptosar a scan revealed only pinpoints in my liver.) The study was opened,and I was told yes I was receiving the study med. I received it for six more months. It worked for about 10 weeks and then the tumors progressed to both lobes. I was started on Oxy+5FU+ LV and the Avastin. This was in Nov. I have lost weight,had hair thinning,but no lash or brow loss. The doseages were reduced because I had a rather severe reaction. I will be 73 in March,first dx May of 1999. My onc said,there was no cure but he thought it could be controlled. Avastin is presetly being used in pancreatic and other cancer treatments. The protien in the urine has to be tested,my hemogl.is good my rbc a little low and I receive the treatments every 20 days. It takes about 3 and 1/2 hours,then I go home with the pump for approx 46 hours(I have a double port) and return to have it disconnected. There is a middle visit for cbc counts and if they are good I repeat the series again. Yes I have had tingling in hand and feet, a slight rash that lasts about two days and I feel lousy for 4 to 5 days afterwards but gradually it goes away. I do get premeds before treatmet and I follow a brat or white diet for 4/5 days or wish I had. I am generally in good health,I have had elevated B/P and Cholesterol but it is controlled by medication(chemically induced) I haved learned to pace myself and the only bad part now is a lower back pain that comes and goes. I don't like to take to much Vioxx because I get a little dizzy. Two tylenol help and I have found if I move and stretch a little it helps. The study originated in Broward(neighboring) county but the oncologist had an office and a practice there. About 15 started,now they are using it in other cancer studies. To date I have not had radiation,liver resection or other surgery. I do have skin cancer,it is clear right now I had a cyst removed about 14 months ago. One port actually burst through my skin. One disadvantage is the port sites are subject to infection and sometimes I feel like I ache all over(like flu) after the Avastin but that disappears. It did work,when the chemo was stopped,the effects lasted for a period of time and blood tests and a C.A.T. revealed the new tunors. I had both a P.E.T and a C.A.T. in mid Dec. Mixed results. But I have had four treatments of the Oxy/5FU/LV/Avastin since then and one previous. We did discuss Xeloda but the oncologist wanted me to finsh the Oxy before he tried something new, They pay for the medication(Avastin) but not the scans or x-rays. Some insurances will not cover study meds. Sometimes reactions differ in men and women and it appears that if you have received radiation there is a different protocol. We wrote to the company, every 6 week or so they uprgade their programs and we have to sign new consent forms. There are as far as I am aware six studies presently being conducted with Avastin. That's about all I can think to say. It may definitely hold hope and there are a number of similar products on or about to be in the marketplace soon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2004 Report Share Posted February 3, 2004 Thanks for your reply Nick. I am sure many here on the board value you sharing your experience with us. Best Regards, Ed Quote Link to comment Share on other sites More sharing options...
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