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quixote



Joined: 02 Aug 2011
Posts: 1
Location: New Port Richey, FL

Post Posted: Tue Nov 22, 2011 7:49 am Reply with quote    Back to top    

ramblemutt wrote:
Just an update. I have just been accepted to participate in phase II of this trial...I will take HRCT on Tuesday next and begin infusion soon after. First infusion two hours long, then thirty minute infusions every 3 weeks for a year as I understand it. I am one of 48 participants. My fibrosis is NOT radiation induced.

I'll keep all posted. It appears from all I have read and discussed with research team that side effects are minimal.

I was a participant in the Coumadin (ACE) trials that were discontinued halfway through. I understand it was having no positive effects. I still don't know if I was on Coumadin or placebo.


I have IPF and just received the second infusion in the same trial you are in. As you have been in it longer, wondering if you notice any difference. Thanks, Bob Hall

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Diagnosed with IPF March 2011
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ramblemutt



Joined: 03 Aug 2010
Posts: 28
Location: Utah

Post Posted: Sat Mar 24, 2012 11:29 am Reply with quote    Back to top    

No changes either way to this point. I just passed the halfway point in the trial.

_________________
Dx'd w/IPF 6/1/2010.
Enrolled in Coumadin Clinical study 7/23/2010
Enrolled in Fibrogen study (FG-3019) 7/2011..current
75 yrs young
living at 6700'
24/7 O2 ... VA
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ramblemutt



Joined: 03 Aug 2010
Posts: 28
Location: Utah

Post Posted: Thu Feb 21, 2013 6:42 pm Reply with quote    Back to top    

Another update.....now in the extended stage of Phase two....it's been over 18 months now and I am maintaining status quo in all categories of PFT. Am still optimistic about FG-3019 abilities in slowing things down They have recently opened trial to additional patients. Will update as new info becomes available. Hang in there. Cool

_________________
Dx'd w/IPF 6/1/2010.
Enrolled in Coumadin Clinical study 7/23/2010
Enrolled in Fibrogen study (FG-3019) 7/2011..current
75 yrs young
living at 6700'
24/7 O2 ... VA
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ramblemutt



Joined: 03 Aug 2010
Posts: 28
Location: Utah

Post Posted: Sat Dec 14, 2013 12:22 pm Reply with quote    Back to top    

I completed this trial in July. I have experienced only a very minimal degradation of my condition in 3.5 years. I was told by my handler at the Lung Research Lab here at the University of Utah that Fibrogen intends to come on line again in January or February of 2014 and extend infusion privileges to those of us who have completed phase II with the view that FG-3019 is having a positive impact toward slowing progression of the fibrosis. That's all I know at the moment....will follow up.

I have rejected another clinical trial in the interim...it just did not feel right...and I was rejected for yet another because I have a mild heart glitch.

Keep up the good fight. I am currently classified as moderate to severe according to existing PFT standards. Smile

_________________
Dx'd w/IPF 6/1/2010.
Enrolled in Coumadin Clinical study 7/23/2010
Enrolled in Fibrogen study (FG-3019) 7/2011..current
75 yrs young
living at 6700'
24/7 O2 ... VA
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Anella



Joined: 16 Aug 2014
Posts: 14
Location: Oregon Coast

Post Posted: Fri Sep 05, 2014 9:21 am Reply with quote    Back to top    

I'm new to interstial disease, forums and reading of clinical trial info. When I was randomly browsing I found the following link re FG-3019:

http://www.clinicaltrials.gov/ct2/show/NCT01890265?term=3019-067&rank=1

On the FibroGen site. If I'm reading it correctly it says that they are currently recruiting IPF patients, verified as of August 2014.

Most of the posts in this thread say that FG-3019 has been withdrawn from consideration for IPF purposes. What am I misunderstanding?

Also, in general, is it possible to participate from a distance? This trial requires infusions at 3 week intervals. The closest trial for me is 10 hours away. Do you know of occasions when the trial drug administration can occur locally and be supervised from a participating trial center? I can call and ask, of course, but I'd like to get some idea first.

Thanks.
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'Tis Maggie



Joined: 20 Jan 2012
Posts: 365
Location: Bellefonte, Pennsylvania

Post Posted: Fri Sep 05, 2014 5:22 pm Reply with quote    Back to top    

Sometimes they do allow people to do the testing locally so it is always good to check when you aren't sure. It only takes a phone call to find out. The same with your question about FG-3019 - just call and see what they say. Please share the information with us!

Right now Pirfenidone and Nintedanib are offered under the early access program since they are soon to be the first approved medication for Pulmonary Fibrosis. The drugs are both free but you do need to visit a clinic but call because one may be closer than you think. In any case, these 2 medications are supposed to be approved by the end of the year. It's been a long wait.

To access Pirfenidone information, call InterMune Medical Information at 888-486-6411.
To access information on Nintedanib please call Boehringer Ingelheim at 866-438-8611

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Maggie
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