Guest guest Posted August 31, 2009 Report Share Posted August 31, 2009 Merf, You go get this disease for all of us. You sure have a great approach. I must have missed your posts. Which trial are you entering? Where are you participating-what hospital, etc.? Good luck you - you will be on prayer list forever, Dorothy Reinecke Fayetteville, GA (20 miles south of Atlanta) 66 - UIP 7/05 From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of murphy.patrick10Sent: Monday, August 31, 2009 8:06 PMTo: Breathe-Support Subject: Clinical Trial Hey just want to let the group know that I go in for first round of infusions on Thur. Sept 3. They say I will be in hospital 6-8 hrs. First all the tests that we have all come to love, PFT, 6 min walk, DLCO, echo, blood work, urine (steriods?ha ha),questionnaires. The infusion will take 90 minutes. It will be one of 4 groups ; Placebo; CNTO 888, 1mg; 5mg; 15mg. Starting to feel a bit apprehensive. My wife is behind me all the way, thank God, but she wonders if I am doing the right thing. I say we have to find a way to stop this thing and experimentation is the only way. I am very fortunate that I am still healthy enough to be able to do this and I plan on doing everything with the biggest smile and the heartiest laugh that i can muster. I have always been an upbeat sort of guy and this damn thing has a fight on its hands. If I make 1 person laugh when I'm there that means I've already won the battle, the war will take a day or two longer. Anyways guys, I've rambled enough, every body hang tough we shall persevere.Merf 61 IPF 05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2009 Report Share Posted August 31, 2009 Merf, Thank you for doing this. It may or may not benefit you but your participation will benefit more people than you can count who will come after you. That goes for everyone who is chooses to and is able to participate in a clinical trial. Thank you, thank you from all of us! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Monday, August 31, 2009 8:06:12 PMSubject: Clinical Trial Hey just want to let the group know that I go in for first round of infusions on Thur. Sept 3. They say I will be in hospital 6-8 hrs. First all the tests that we have all come to love, PFT, 6 min walk, DLCO, echo, blood work, urine (steriods?ha ha),questionnaires. The infusion will take 90 minutes. It will be one of 4 groups ; Placebo; CNTO 888, 1mg; 5mg; 15mg. Starting to feel a bit apprehensive. My wife is behind me all the way, thank God, but she wonders if I am doing the right thing. I say we have to find a way to stop this thing and experimentation is the only way. I am very fortunate that I am still healthy enough to be able to do this and I plan on doing everything with the biggest smile and the heartiest laugh that i can muster. I have always been an upbeat sort of guy and this damn thing has a fight on its hands. If I make 1 person laugh when I'm there that means I've already won the battle, the war will take a day or two longer. Anyways guys, I've rambled enough, every body hang tough we shall persevere.Merf 61 IPF 05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2009 Report Share Posted August 31, 2009 Merf., Thanks for doing the trial, hopefully good things will come from it. It will take a lot of people tohelp cage this monster. Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. Hey just want to let the group know that I go in for first round of infusions on Thur. Sept 3. They say I will be in hospital 6-8 hrs. First all the tests that we have all come to love, PFT, 6 min walk, DLCO, echo, blood work, urine (steriods?ha ha),questionnaires. The infusion will take 90 minutes. It will be one of 4 groups ; Placebo; CNTO 888, 1mg; 5mg; 15mg. Starting to feel a bit apprehensive. My wife is behind me all the way, thank God, but she wonders if I am doing the right thing. I say we have to find a way to stop this thing and experimentation is the only way. I am very fortunate that I am still healthy enough to be able to do this and I plan on doing everything with the biggest smile and the heartiest laugh that i can muster. I have always been an upbeat sort of guy and this damn thing has a fight on its hands. If I make 1 person laugh when I'm there that means I've already won the battle, the war will take a day or two longer. Anyways guys, I've rambled enough, every body hang tough we shall persevere. Merf 61 IPF 05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2009 Report Share Posted August 31, 2009 My sentiments exactly. There is no way I am going out of this world with this insidious disease without a fight. I am enlisting family and friends on the HR 1079 front. I am in two study groups now (one the National Jewish genetic study, the second one here in Utah developing the most productive pulmonary rehab program at the University of Utah) and am ready willing an able to sign up for more. It is a travesty that we cannot do more for people afflicted with the different kinds of PF. Stefani 61, Utah ILD 2/2006, NSIP (cellular) 6/2009, Diabetes II 2/2006, Sleep Apnea 4/2009 > > Hey just want to let the group know that I go in for first round of infusions on Thur. Sept 3. They say I will be in hospital 6-8 hrs. First all the tests that we have all come to love, PFT, 6 min walk, DLCO, echo, blood work, urine (steriods?ha ha),questionnaires. The infusion will take 90 minutes. It will be one of 4 groups ; Placebo; CNTO 888, 1mg; 5mg; 15mg. Starting to feel a bit apprehensive. My wife is behind me all the way, thank God, but she wonders if I am doing the right thing. I say we have to find a way to stop this thing and experimentation is the only way. I am very fortunate that I am still healthy enough to be able to do this and I plan on doing everything with the biggest smile and the heartiest laugh that i can muster. I have always been an upbeat sort of guy and this damn thing has a fight on its hands. If I make 1 person laugh when I'm there that means I've already won the battle, the war will take a day or two longer. Anyways guys, I've rambled enough, every body hang tough we shall persevere. > Merf 61 IPF 05 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2009 Report Share Posted August 31, 2009 Stefani, Thank You for doing trials too. Take Care. Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. My sentiments exactly. There is no way I am going out of this world with this insidious disease without a fight. I am enlisting family and friends on the HR 1079 front. I am in two study groups now (one the National Jewish genetic study, the second one here in Utah developing the most productive pulmonary rehab program at the University of Utah) and am ready willing an able to sign up for more. It is a travesty that we cannot do more for people afflicted with the different kinds of PF. Stefani 61, Utah ILD 2/2006, NSIP (cellular) 6/2009, Diabetes II 2/2006, Sleep Apnea 4/2009 > > Hey just want to let the group know that I go in for first round of infusions on Thur. Sept 3. They say I will be in hospital 6-8 hrs. First all the tests that we have all come to love, PFT, 6 min walk, DLCO, echo, blood work, urine (steriods?ha ha),questionnaires. The infusion will take 90 minutes. It will be one of 4 groups ; Placebo; CNTO 888, 1mg; 5mg; 15mg. Starting to feel a bit apprehensive. My wife is behind me all the way, thank God, but she wonders if I am doing the right thing. I say we have to find a way to stop this thing and experimentation is the only way. I am very fortunate that I am still healthy enough to be able to do this and I plan on doing everything with the biggest smile and the heartiest laugh that i can muster. I have always been an upbeat sort of guy and this damn thing has a fight on its hands. If I make 1 person laugh when I'm there that means I've already won the battle, the war will take a day or two longer. Anyways guys, I've rambled enough, every body hang tough we shall persevere. > Merf 61 IPF 05 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2009 Report Share Posted August 31, 2009 Merf, I will be thinking about you and I can't wait to hear all about it. Yours is the right reason for going into trials. Is your trial study set to default to the trail medication if your lung function falls while you are taking placebo? The Gleevec study with which I am familiar was set up so as not to let the control group participants decline beyond a certain percentage below their initial testing. Unfortunately, my lung function was below acceptable limits. Now my higher lung funtion or lack of decline has kept me out of trials I would be interested in. Thank you for what you are doing for us, and I hope to hear good nuew soon. Jerry/Mississippi/54/IPF/dx April 05 --- In Breathe-Support , " murphy.patrick10 " wrote: > > Hey just want to let the group know that I go in for first round of infusions on Thur. Sept 3. They say I will be in hospital 6-8 hrs. First all the tests that we have all come to love, PFT, 6 min walk, DLCO, echo, blood work, urine (steriods?ha ha),questionnaires. The infusion will take 90 minutes. It will be one of 4 groups ; Placebo; CNTO 888, 1mg; 5mg; 15mg. Starting to feel a bit apprehensive. My wife is behind me all the way, thank God, but she wonders if I am doing the right thing. I say we have to find a way to stop this thing and experimentation is the only way. I am very fortunate that I am still healthy enough to be able to do this and I plan on doing everything with the biggest smile and the heartiest laugh that i can muster. I have always been an upbeat sort of guy and this damn thing has a fight on its hands. If I make 1 person laugh when I'm there that means I've already won the battle, the war will take a day or two longer. Anyways guys, I've rambled enough, every body hang tough we shall persevere. > Merf 61 IPF 05 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2009 Report Share Posted September 1, 2009 thank you for participating in the trial and good luck to you Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Clinical TrialTo: Breathe-Support Date: Monday, August 31, 2009, 8:06 PM Hey just want to let the group know that I go in for first round of infusions on Thur. Sept 3. They say I will be in hospital 6-8 hrs. First all the tests that we have all come to love, PFT, 6 min walk, DLCO, echo, blood work, urine (steriods?ha ha),questionnaires. The infusion will take 90 minutes. It will be one of 4 groups ; Placebo; CNTO 888, 1mg; 5mg; 15mg. Starting to feel a bit apprehensive. My wife is behind me all the way, thank God, but she wonders if I am doing the right thing. I say we have to find a way to stop this thing and experimentation is the only way. I am very fortunate that I am still healthy enough to be able to do this and I plan on doing everything with the biggest smile and the heartiest laugh that i can muster. I have always been an upbeat sort of guy and this damn thing has a fight on its hands. If I make 1 person laugh when I'm there that means I've already won the battle, the war will take a day or two longer. Anyways guys, I've rambled enough, every body hang tough we shall persevere.Merf 61 IPF 05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2009 Report Share Posted September 1, 2009 Good Luck!!!! I am also a drug trial participant so I understand all the emotional stuff that goes along with that. I'll post more about that later - just wanted to send you my two cents of support. We're all this thing together. Hugs. Kirkwood Hermansky-Pudlak Syndrome albinism 02 / PF 06 > > > Subject: Clinical Trial> To: Breathe-Support > Date: Monday, August 31, 2009, 8:06 PM> > > > > > > Hey just want to let the group know that I go in for first round of infusions on Thur. Sept 3. They say I will be in hospital 6-8 hrs. First all the tests that we have all come to love, PFT, 6 min walk, DLCO, echo, blood work, urine (steriods?ha ha),questionnaires. The infusion will take 90 minutes. It will be one of 4 groups ; Placebo; CNTO 888, 1mg; 5mg; 15mg. Starting to feel a bit apprehensive. My wife is behind me all the way, thank God, but she wonders if I am doing the right thing. I say we have to find a way to stop this thing and experimentation is the only way. I am very fortunate that I am still healthy enough to be able to do this and I plan on doing everything with the biggest smile and the heartiest laugh that i can muster. I have always been an upbeat sort of guy and this damn thing has a fight on its hands. If I make 1 person laugh when I'm there that means I've already won the battle, the war will take a day or two longer. Anyways guys,> I've rambled enough, every body hang tough we shall persevere.> Merf 61 IPF 05> Quote Link to comment Share on other sites More sharing options...
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