Guest guest Posted November 17, 2009 Report Share Posted November 17, 2009 Terre never heard of it good luck with whatever you decide to do Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: CNTO 888To: Breathe-Support Date: Tuesday, November 17, 2009, 2:06 PM I've been asked if I'd like to participate in the Centocor CNTO 888 trial. I've read what's available on line. It's not approved for anything but is being investigated for various conditions. Does anyone have any real life experience with this drug? Side effects etc.?Thanks for any input.Terre, IPF, 6-08, FL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2009 Report Share Posted November 18, 2009 Thanks Joyce, I have a meeting with the trial group next week to go over the requirements. I'll decide then. What I like about it is that I can keep taking any other meds for IPF unless I'm in another trial, which I am not. Terre, IPF, 6-08, FL > > > > Subject: CNTO 888 > To: Breathe-Support > Date: Tuesday, November 17, 2009, 2:06 PM > > > Â > > > > I've been asked if I'd like to participate in the Centocor CNTO 888 trial. I've read what's available on line. > It's not approved for anything but is being investigated for various conditions. Does anyone have any real life experience with this drug? Side effects etc.? > Thanks for any input. > Terre, IPF, 6-08, FL > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2009 Report Share Posted November 24, 2009 I am trying to volunteer for an IPF study with the University of Chicago. The Centocor CNTO trial is one of four possibilities. I will not know more until Jan 2010. I hope I can avoid the Panther trial. Burns Subject: CNTO 888To: Breathe-Support Date: Tuesday, November 17, 2009, 2:06 PM I've been asked if I'd like to participate in the Centocor CNTO 888 trial. I've read what's available on line. It's not approved for anything but is being investigated for various conditions. Does anyone have any real life experience with this drug? Side effects etc.?Thanks for any input.Terre, IPF, 6-08, FL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2009 Report Share Posted November 25, 2009 I am currently in the Centcor clinical trial for CNTO888. It is a double blind placebo controlled random trial. It is a phase 2 study which means it is first time being tested on humans with IPF. It has been tested on some cancer tumors. I dont know the results. The doses are either 5, 10, 15 mg. or placebo. It is chosen at random who gets what. Nobody knows except Centcor labs, who is on what dose. It is given by intervenous, they call it infusion,and takes 90 minutes. I am monitored the whole time I am getting it and blood pressure taken every 15 minutes. They take a whole bunch of blood samples before and after the infusion. At the beginning they took 16 vials before and 4 after. After my first infusion they kept me in hospital for 4 hrs. to monitor me. When I got home the reaction hit me like a ton of bricks. Fever 101.7, chills & shakes. They gave me heck next visit for not calling them. Week 4 infusion not so bad. My pulmo dude says that due to my reaction he is pretty sure I am getting the real juice. I go every 4 weeks for tests and infusion. I have to go tomorrow and this is a long visit as I go through all the tests, questioneairs. I will be in hospital about 6-7 hrs. I hate that PFT the worst. This is now week 12 for me. The infusions last until week 48 I believe and they keep monitoring me until week 72 so I was told. I hope this helps and gives you some insight from someone who is going thru it. If you have any questions I will do my best to answer them. Merf 62 IPF 05 > > > > Subject: CNTO 888 > To: Breathe-Support > Date: Tuesday, November 17, 2009, 2:06 PM > > > Â > > > > I've been asked if I'd like to participate in the Centocor CNTO 888 trial. I've read what's available on line. > It's not approved for anything but is being investigated for various conditions. Does anyone have any real life experience with this drug? Side effects etc.? > Thanks for any input. > Terre, IPF, 6-08, FL > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2009 Report Share Posted November 25, 2009 Hi , I signed up yesterday for the CNTO 888 trial. They started the PFT part of it and sent it off to Centecor, but didn't have time for the blood draw. I was on my way back today when they canceled because the lab is closed for the Holiday. I'll go Tuesday for the blood. In the mean time Centecor has faxed them that mt PFT's were no good. They want them done over. Just my favorite thing to do. I think maybe the tech didn't send them correctly to Centecor. Since I'm the first at U of Miami they had the manual out alot while trying to send them. Gives you confidence doesn't it? I'm getting a headache already. Terre, IPF, 6-08, FL > > > > > > From: higgstk@ <higgstk@> > > Subject: CNTO 888 > > To: Breathe-Support > > Date: Tuesday, November 17, 2009, 2:06 PM > > > > > > Â > > > > > > > > I've been asked if I'd like to participate in the Centocor CNTO 888 trial. I've read what's available on line. > > It's not approved for anything but is being investigated for various conditions. Does anyone have any real life experience with this drug? Side effects etc.? > > Thanks for any input. > > Terre, IPF, 6-08, FL > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2009 Report Share Posted November 25, 2009 Hi Terre I had trouble the first couple of times to get the computer to accept results. She figured out that the way I exhaled caused the problem. After doing it 6 times, blowing the mouthpiece across the room, and falling off my chair we finally got it figured out. After the last inhale, exhale immediately and HARD. This is what the computer picks up on. Need 2 tests with comparetable results. She always gets me to do 3 tests. Hang in there and good luck to you. Let me know how you make out. Merf 62 IPF 05 > > > > > > > > > From: higgstk@ <higgstk@> > > > Subject: CNTO 888 > > > To: Breathe-Support > > > Date: Tuesday, November 17, 2009, 2:06 PM > > > > > > > > > Â > > > > > > > > > > > > I've been asked if I'd like to participate in the Centocor CNTO 888 trial. I've read what's available on line. > > > It's not approved for anything but is being investigated for various conditions. Does anyone have any real life experience with this drug? Side effects etc.? > > > Thanks for any input. > > > Terre, IPF, 6-08, FL > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2009 Report Share Posted November 25, 2009 WOW Merf what a brave man you are to be a Guinea Pig for us all....do you know what the basis of the CNTO888 is..does it have a 'common' name? It sounds as though it is a form of Chemotherapy drug. All the best of luck with it & keep us posted...I for one will be watching with interest. I do hope you don't cop too many more nasty side effects if you are on the real 'juice'. in Oz > > > > > > From: higgstk@ higgstk@> > Subject: CNTO 888> > To: Breathe-Support > > Date: Tuesday, November 17, 2009, 2:06 PM> > > > > > Â > > > > > > > > I've been asked if I'd like to participate in the Centocor CNTO 888 trial. I've read what's available on line. > > It's not approved for anything but is being investigated for various conditions. Does anyone have any real life experience with this drug? Side effects etc.?> > Thanks for any input.> > Terre, IPF, 6-08, FL> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2009 Report Share Posted November 30, 2009 merf thank you for volunteering for the clinical trial Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: CNTO 888To: Breathe-Support Date: Wednesday, November 25, 2009, 7:10 AM I am currently in the Centcor clinical trial for CNTO888. It is a double blind placebo controlled random trial. It is a phase 2 study which means it is first time being tested on humans with IPF. It has been tested on some cancer tumors. I dont know the results. The doses are either 5, 10, 15 mg. or placebo. It is chosen at random who gets what. Nobody knows except Centcor labs, who is on what dose. It is given by intervenous, they call it infusion,and takes 90 minutes. I am monitored the whole time I am getting it and blood pressure taken every 15 minutes. They take a whole bunch of blood samples before and after the infusion. At the beginning they took 16 vials before and 4 after. After my first infusion they kept me in hospital for 4 hrs. to monitor me. When I got home the reaction hit me like a ton of bricks. Fever 101.7, chills & shakes. They gave me heck next visit for not calling them. Week 4 infusion not so bad. My pulmo dude says that due to my reaction he is pretty sure I am getting the real juice. I go every 4 weeks for tests and infusion. I have to go tomorrow and this is a long visit as I go through all the tests, questioneairs. I will be in hospital about 6-7 hrs. I hate that PFT the worst. This is now week 12 for me. The infusions last until week 48 I believe and they keep monitoring me until week 72 so I was told. I hope this helps and gives you some insight from someone who is going thru it. If you have any questions I will do my best to answer them.Merf 62 IPF 05 > > > From: higgstk@... <higgstk@... >> Subject: CNTO 888> To: Breathe-Support@ yahoogroups. com> Date: Tuesday, November 17, 2009, 2:06 PM> > > Â > > > > I've been asked if I'd like to participate in the Centocor CNTO 888 trial. I've read what's available on line. > It's not approved for anything but is being investigated for various conditions. Does anyone have any real life experience with this drug? Side effects etc.?> Thanks for any input.> Terre, IPF, 6-08, FL> Quote Link to comment Share on other sites More sharing options...
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