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TETON PPF
DR. Maia recently posted a column indicating the first patient has enrolled in the Teton/Tyvaso clinical trial. There i s sister trial that appears o be the same, RIN-PF-301. I have been enrolled since 3/23, and I know other members have as well. If you’re interested in Tyvaso, search clinicaltrials.gov for this one also, you might be able to find a location near you. Feel free to contact me if you would like further info.
Pete Besio
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9 Replies
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Hi Pete
I am in Nova Scotia in Canada and I am waiting to get in this trial. The trial was suppose to be approved to go ahead in September this year however a hurricane prevented the team from coming from the USA So I am still waiting. I have IPF with a loss of 30% lung function after either and infection or inflammation this summer. They really don’t know what caused it. I was put on Prednisone two rounds but baseline did not change. I was on Ofev at the time now on Esbriet so time will tell if there is any improvement.
Just wondered what condition initiated your referral for this trial? Have you seen or felt any improvement? Also who is Dr
maio? Spelling might be wrong….
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Thank you in advance
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Peggy
I was referring to this column posted in PF News
TETON PPF study of nebulized Tyvaso enrolls first patient (pulmonaryfibrosisnews.com)
I was diagnosed with IPF in 2019, with the attendant decline in my health since then. I am throwing every tool I can find at the disease to preserve my quality of life as much as possible. One of those tools is enrolling in clinical trials. The Teton trial is my third. I do trials for two reasons: to do what i can to help the community find a cure, and in the hopes that I will not be on a placebo in the trial and perhaps I will be administered an effective drug well before it is available in the market place. With that being said, I am about to disenroll from the Teton trial. I was originally excited about the inhaled application, i liked the idea of applying the medication directly to the affected area. But the drug administration process was cumbersome and doesn’t fit my lifestyle. I understand there is a new administration method for Tyvaso that is less cumbersome, but I don’t think it is near ready for a trial on IPF.
One last thought on trials: I chose to enroll in Phase 3 trials only, at phase 3 it is my understanding that these medications have shown enough promise to offer a glimmer of hope, and to be blunt, my time is limited.
If i were to offer advice it would be to fight you condition like your life depends on it, gain as much knowledge as you can about it, and be a very strong advocate for yourself within the health care system. I have the very good fortune of having a healthcare team that listens to me, and are willing to execute things i suggest if the make sense. But they have many responsibilities, and nobody cares about me as much as I (and thankfully my wife) do.
pulmonaryfibrosisnews.com
TETON PPF study of nebulized Tyvaso enrolls first patient
The study will evaluate how safe Tyvaso is versus a placebo and how well it improves lung function in up to 698 adults, 18 and up, with PPF.
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I am not sure if I am waiting for tyvaso … I too am in good shape but got about ten years on you. I was diagnosed in 2019 and in April of this year I was in normal range for FVC. I lost 30% lung capacity over the summer. I too used to bike and ski and run so was in good shape. I had biked 1000 km the summer of 2019 in Ottawa I had a PFT September 2019 and HRT Cat Scan and apparently I lost some lung functioning but it came back and they could not determine why as it never happens. I am hoping it happens again as I am on POC oxygen but requiring less oxygen now.
How do you get in Phase 3 …..I assume I am starting Phase 1. All I know it is a nose spray Trepostinal. Getting an Echocardiogram tomorrow as not sure about the measurements of Pulmunary Artery. Have not had arterial blood pressure done but myBP is like a schoolgirls as low never a problem.
Have you heard of Aloft another trial by Squibb Meyers ….it claims to lower already reduced lung functioning by up to 69%. It s a short term treatment as well maybe six months…… I am very interested in that trial result. It is in final phase.
Like you I do my homework and have got the ear of Respirologist. I have fought this time hard to improve my exercise capabilities as my life does depend on it. Now trying to figure out the oxygen for cold weather as POC can’t handle it. Trying to get continual flow in the size of wine bottle with a regulator and it goes in backpack! Never say never!
Peggy
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Peggy,
by Phase 3, I am referring to the phases of clinical trials. Trials progress from Phase 1 through 3, Phase 1 being very early, Phase 3 being final phase. This process is exceptionally long and I am not an authority, but most Phase 3 trials are a year long, it can take years to get suffficient enrollment on top of that. I am not counting on any medication to be available to the public in time to help me. I have had this opinion validated by medical professionals.
Getting sufficient supplemental oxygen is a challenge. I recently attended the PFF Summit, hosted by the Pulmonary Foundation and proper supplemental O2 availability was a topic. I have been working toward getting enough O2 to allow me to exercise well enough to extend my current circumstances. O2 cylinder volume at a constant flow presents a challenge, and the “wine bottle” size doesn’t offer a lot of volume. I am still working on my quest, i will keep you posted as I learn more. I suggest you look into higher flow pulse regulators, I met a guy that uses 5LPM pulsed, and he is working out HARD. He is a triathlete, and his DLCO is 31% of expected, a pretty low number. Also, you might look into liquid oxygen, which i am learning is hard to get.
On the cardiac/pulmonary hypertension topic: I recently had my aortic valve replaced. It is a little early for me to give my final verdict on it, but the early results are really positive. The cardiology peice of the puzzle was contributing to my malaise.
Keep up the fight, I will keep you posted on my results.
Pete
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Thanks I appreciate all new info!
Peggy
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From the looks of things this trial is not available in the USA. Can anyone confirm that please? – Steve
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Steve,
At least the -301 arm is in the US, that is the one I am currently enrolled in. Currently paused, about to withdraw.
I am enrolled at Tampa General Hospital.
I thought -305 arm was IS also, but it’s been a while since I looks at that one.
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Peggy,
I am awaiting delivery of some “D” sized O2 cylinders and a regulator that will provide up to 6LPM, it will do either constant flow or pulsed, user selectable. My calcs show it will provide a little over an hour O2 at 6LPM constant flow. I had to know my stuff to get my O2 provider to believe me that it would help, fortunately I do. This unit is bigger than a normal wine bottle, if you search Amazon you can get the specs 6 lbs, about what my POC w/extended matter ways,fits in a backpack, also avail on Amazon .
I hope to by 12/11. Will post my results when I get it. If you want the dertas on how I got this done, message me privately here and I will summarize it.
Pete
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