Pete Besio

Sylvio,
I don’t have any input regarding the effects of altitude on life expectancy of IPF patients.

I do have input on the “3 to 5 year” life expectancy however. The 3 to 5 year expectancy data is very dated. My IPF diagnosis was provided to me by my pulmonologist, and confirmed by 2 additional pulmonologist. All 3 of these doctors informed…[Read more]

my win this week was…I celebrated my 67th birthday yesterday by riding my bicycle 67.2 miles, continuing a tradition I established on my 60th birthday of riding a mile for every year of my age on my birthday. I have always looked forward to this tradition, it is both a lot of fun and a significant accomplishment. As my birthday approached, I was…[Read more]

@@lnour
I too am very interested in stem cell therapy as an IPF cure. When I was participating in the Galapagos GLPG1690 trial, the clinic that I was working with had someone drop out of the trial because they were pursuing stem cell treatment. The clinic echoed the thoughts that Ben posted.

There is a clinical trial currently underway on stem…[Read more]

We all have PFTs done…..I like this youtube video explaining PFTs

Charlene,
I too have seen the Tyvaso information and it is on my radar too. It looks like there is a clinical trial evaluating the efficacy of Tyvaso in treating IPF about to start. As I think you have previously noted, your probably not eligible to participate, as age is one of the criteria for exclusion. The drug named in the trial is…[Read more]

Well Ron…there isn’t much I can add to THAT other than ot second that emotion (yes I am quoting Smoky Robinson). I am pretty hopeful and thankful as well, but we all have days…I will print you post out…sometimes we need a reminder to be thankful. That was really nicely written.

Bernard,
I would like to address the concern you raise about only seeing your consultant once per year, and when you are able to see them, they don’t have time to go into depth on your health concerns. As patients, we all wish we could spend more time with our doctors. In reality, the practice of medicine is a business, be it private practice…[Read more]

Ron,
My post was in response to another post by “Anonymous” which has since been deleted by the mods. This post did indeed reference that this person had been cured using the herbal supplements provided by WEI. I was pretty sure the mods would delete that post and was hoping they would delete mine to, because without that post in the…[Read more]

@Anonymous – I am a wise guy, and I had concocted a tongue in cheek answer to your post, but I decided not to soil the dignity of the forum by posting it. Anonymous? Inactive? Miracle cure? hmmmmmmmm

Jill,
I am on Esbriet, and also fight nausea. I haven’t heard of BRAT, thanks Thom I will try that. I have for years been on a pretty low carb diet (not much in the way of bread, potatoes, rice) but find myself craving bread of late. And saltine crackers…they seem to settle my stomach. And ginger candies…I am amazed at the different forms…[Read more]

Pam,
Esbriet received its FDA approval January 11, 2017, OFEV in 2014. Both pretty recent. My pulmonologist told me the 3-5 year expectancy is a bit of an artifact from the days before either of these drugs were available. As you can tell from this forum, there are very many people that have far exceeded that expectancy. Keep educating, keep…[Read more]

Manzurul,

I too will be 67 in a few months, I was diagnosed last year, started Esbriet September or so.  My last two visits to my pulmonologist have shown steady gains in my pulmonary function tests.  Is it the Esbriet? Is it the fact that I have kicked my exercise routing up a couple of notches?  Is it the Galapagos GLPG 1690 clinical trial I wa…[Read more]

HI Randy,

See the messages above.  I was a participant in GLPG 1690, as were a number of forum members.  It has been cancelled. Some info here:

Galapagos and Gilead Discontinue ISABELA Phase 3 Trials in IPF | Business Wire

I have my exit screening scheduled for Monday, I will post if I learn anything.

Pete Besio

Yep, i got the same call.  I will be meeting with my trials nurse on Monday, if I learn anything of value I will post it here.

Hey Mark,

This is a cool post. Pursed lip breathing was part of a pulminary rehab program I participated in.  I did find it helpful, but didn’t have the discipline to incorporate it into my daily life.  I was previously unfamiliar with the Buteyko Method, thanks to Charlene for posting that link.  Ever heard of the 3 6 5 method? I just read ab…[Read more]

Carol Libby,

I wasted about 2-3 months trying to qualify for assistance only to end up empty.  Same story as yours.  We aren’t rich, but I have recently retired, my wife is about to.  The $520 per month wasn’t part of our retirement plan!!

I am pretty sure that those that prescribe medications have no idea of the financial implications.  I cho…[Read more]

Steve,

I hear you on the fatigue and nausea.  Have you tried Ondansetron (Zofran) for the nausea?  It has helped me.  And there are ginger candies from “The Ginger People” that are pretty tasty and seem to help a bit.  I fight the fatigue factor too, but have learned to embrace the afternoon nap.

I agree with Michael about checking with you…[Read more]

Char,

So if i made your day a little better…that made my day a little better.

When I was younger, my lottery fantasy was…when I won…I was going to start a business.  My plan was to build that business with people that I met in my daily life that exhibited that attitude that we all want to be around.  You know, the server in the r…[Read more]

Hey Char,

I resolved very many years ago to stop watching any news network. Does wonders for your outlook on life.

I pay very close attention to the space industry.  The things they accomplish on a regular basis are awe inspiring and uplifting.  I do have the good fortune of living in FL, so I occasionally head over to Cape Canaveral to watch a…[Read more]

Hi Char,

Have you tried a phone app? I use one called Medisafe, but I am sure there are plenty of them.  The app allows me to enter my meds and sets schedule reminders.  Not sure if you can set different reminders for each med, but you might.

Take care,

Pete