Pete Besio
Forum Replies Created
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We all have PFTs done…..I like this youtube video explaining PFTs
https://www.youtube.com/watch?v=JKbP2zSnfZw -
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 Trepostinil, a web search indicates Tyvaso is the trade name for it. Info can be found:
https://www.clinicaltrials.gov/
https://clinicaltrials.gov/show/NCT04708782
https://en.wikipedia.org/wiki/Treprostinil
The side effects don’t look so cheery, and the drug interactions include a lot of things I bet most of us are on (blood pressure meds, blood thinners). This page might prove interesting:
https://www.drugs.com/mtm/treprostinil.htmlDue to the discontinuation of the Galapagos study for patients on OFEV or Esbriet, I am currently evaluating trials to participate in, and I am looking into this one. I will keep you posted on what I find out.
Best to everyone,
Pete Besio -
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.
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@bernardmckenna
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 medicine or government sponsored medicine. Resources are limited.When I was diagnosed with IPF about 8 months ago, my pulmonologist immediately recommended that I seek care from a teaching hospital with IPF expertise and/or partake in a clinical trial. He told me that either of these avenues would be able to spend much more time helping me than he could. I didn’t understand what he was getting at…until I enrolled in a clinical trial. As part of the clinical trial, I visited the clinic every 4-6 weeks. At each visit, my lung capacity was measured, blood analysis and urinalysis was performed, and I was given a physical examination by a doctor with extensive experience with IPF. I can’t overstate how comforting this care was. I felt I really had my finger on the pulse of my health. Unfortunately, that trial has been cancelled. I am now aggressively seeking another trial to become involved in. I HIGHLY recommend seeking a clinical trial out in your area. Here in the US, clinicaltrials.gov is a database of all trials in the US. Perhaps you can find a similar site in the UK.
Personally, I would be really uncomfortable going a year between Dr. visits. While I was on the trial, my doctor and I agreed a visit every 6 months was sufficient. Upon trial cancellation, I scheduled an appointment with him to determine the frequency of my exams.
Also for me, exercise has been critical. I feel much better when I exercise. If exercise isn’t an option for you, pulmonary rehab is a good start.
Good luck, you will find a lot of support and good information in these forums.
Pete Besio -
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 available. And I like ginger. And when I am feeling really queasy, I resort to Odansetron. I like the disintegrating tablets that you put under your tongue, I find them really helpful.
Pete -
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 positive, and don’t let it get you down. I think we all plan on hanging around longer than 3-5! -
@rthorntonbresnan-net
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
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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.
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@mark-koziol
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 about it yesterday. Basically, three (3) times a day spend five (5) minutes takin six (6) breaths.
Funny, like all things “there is an app for that”. Just searched the Apple App store, there is a Buteyko Breathing app. When I searched for “pursed lip breathing” a few results came back, including games to help children learn to do it to help deal with asthma, anxiety and such.
Thanks for adding to my knowledge base,
Pete Besio
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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 chose to take Esbriet, because at the outsed I thought it was about $200/mo (my cost) cheaper. I was wrong.
I am hoping once we get established on our retirement income funds may come available, but at the end of the day, the Genentech price is over $10K/month. Hard to think i might get it cheap.
I am currently involved in a clinical trial. I can see the expense it takes to get these meds approved. And there aren’t a ton of us with IPF, and I understand they are a for profit business. And…if my choice is $$$$ over quality of life, for now the quality of life wins.
But at $500, i wanna be driving some little red two seater with a rag top…
Happy New Year everyone, Stay as well as ya can!
Pete Besio
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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 doc. When I started esbriet, I had to “titrate up” to the 801mg dosage, I wonder if you would have to do that again if you stop for two weeks?
Good luck with whatever you choose.Pete
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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 restaurant that was something special. The high school kid that you could just tell had IT. Positive people.
And thanks for bringing a smile…
Pete
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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 launch. But SpaceX is very public about what they do, you can watch their accomplishments on YouTube. I thought Elon Musk’s talk of going to Mars was the stuff of fantasy, till i recently watched the launch of SpaceX’s Starship prototype.
But thjat is me. There is so much positive in the world today. People are doing incredible things. People really do care about people. A guy in FL just paid the past due power bills of all the people in his town, and inspired others to do the same. Not seeing much of that on network news.
So my resolution will be to continue to find things that inspire me and make me feel positive, instead of listening to all of the “nattering nabobs of negativity”.
Be well everyone,
Pete Besio
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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
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Mark,
Let me address the most important thing first: Mal’s tolerance for beer! I have been concerned about that since he first posted about it…not that I like my beer…..or maybe I do.
Second, I chose Espbriet over OFEV because I was more concerned about the GI effects that I have heard about with OFEV. I am an avid bicycle rider, I ride 5 days a week for an average of 2 hours in sunny Florida. I figured I could protect myself from the sun, but bathrooms can be hard to find, so I chose Esbriet. Plus I was under the impression Esbriet was cheaper (found out it isn’t, at least on my insurance). I use 50+ sunscreen on my face, got some sun sleeves for my arms. I am 90 days in and am happy to report no issues with the sun sensitivity. I hear that may change, but so far so good. I know we all react differently, but that’s my experience.
Pete
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David,
@davidaswain
As I was perusing the clinical trials website, I came across this and thought of you:
“The Role of Laryngopharyngeal Reflux in IPF: https://www.clinicaltrials.gov/ct2/show/NCT03418350
Not sure if it apples, or if your interested, but thought I would post it.
Pete -
Per an email exchange with my Galapagos Clinical Research Coordinator today:
The “arm” that I am participating in (NCT03733444) recently enrolled its 750th and final patient recently, so I will continue in the study until the 750th patient completes THEIR 52 weeks in the study. Galapagos intends to roll over participants into the open label extension of the study. This extension does NOT include the placebo. Galapagos has applied for this open label extension, but due to COVID, this submission to the FDA has been delayed. So for now I have about 52 weeks left in the study.
The clinic I am working with has recently been approved to enroll patients in the other “arm” (NCT03711162). There are 300 spots still available. Prospective patients can be taking OFEV, Esbriet, or no standard of treatment to participate. If you are near Tampa and are interested in participating, I will be happy to provide contact info for the clinic. I am impressed with them.
Other part of the US, there are 117 study locations listed in the information for the trial here:
https://www.clinicaltrials.gov/ct2/show/NCT03711162?recrs=a&cond=IPF&cntry=US&draw=2&rank=36
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I just checked the enrollment criteria for the Galapagos study, on of the criteria:
“Subjects receiving local standard of care for the treatment of IPF, defined as either pirfenidone or nintedanib, at a stable dose for at least two months before screening, and during screening; or neither pirfenidone or nintedanib (for any reason). A stable dose is defined as the highest dose tolerated by the subject during those two months”.
So it seems to me that the arm that is still open for enrollment will accept patiens on either Esbriet or Ofev. My understanding is that the study drug is designed to work in conjunction with Esbriet or Ofev, which is a little disapointing given the side effects we seem to exerience with either of these drugs.
I am trying to get a feel for how many slots are still open, will post if and when I do.
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@abyron888
There are two arms to this study, UCSF is on the same arm that my clinic is on. If your interested, there is another arm:
Not sure where your located, assuming CA. This arm of the study has locations in LA, San Diego, Stanford, and Palm Springs.
Thanks for posting about the upcoming trials, be interesting to hear of their progress.
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Hi Jay,
I empathize with you, as I bet many members of the forums do. The Google provides much information, but a lot of it needs filtering. When I was diagnosed with IPF, I Googled it. Life expectancy of 3-5 years was what I found. YIKES. I am about 6 months into my diagnosis and have spent significant time learning about IPF. I have come to understand that the 3-5 year life expectancy is very dated information, PHEW. Knowledge has really helped me deal with IPF, and I have commited myself to doing everything I can to delay its effect on my day to day life. Good luck on your journey, these forums are an outstanding source of information. And when you get the blues, it is a great place to come for inspiration to move forward.
Pete -
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 thread…mine makes no sense.Pretty sure a lot of us would pay $300 for the cure….most of us are paying significantly more than that per month for medication that can only promise to stem the progress of the disease.
PEte -
@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
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@mhkhan93
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 was involved in? No one can say.
I am not pleased to be on any of these drugs. During discussions with my Galapagos Clinical Trial nurse, I shared this thought with her, and because I was showing improvement, I indicated that I was considering getting off these meds. Her response was interesting: her opinion was that IPF should be treated in a similar fashion to cancer, in that we should throw everything we have at it in the interest of prolonging quality of life. I thought that was interesting, and gave it great consideration, and have decided to continue with the path I am on, without the Galapogos trial as it has been discontinued. I have read and heard in many places that one can’t predict the rate of decline for IPF patients, but that often once the decline begins, it is steep. This was part of her reasoning.
I will continue with Esbriet. The side effects are tolerable, the expense isnt’, although I have the good fortune to be able to absorb that expense.
Everyone reacts differently to IPF, so I have been told. I am going to continue to fight it with every tool I have.
Good Luck!
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Doug,
I feel your pain on the Esbriet expense, my copay is about half yours and it stings for sure. Regarding the Galapegos study, the clinic that I am attending seems to feel that the study medication is having a positive effect on participants. I am not an expert on placebos, but i think by definition a placebo should have no effect on you, either positive or negative. What part of FL are you in? If you are near Clearwater, you can call St. Francis at 727-210-4606. I believe their phone tree includes an option for clinical trials, select that. Odds are you will need to leave a message, but they have always been prompt in getting back to me. The trial allows me to have nearly monthly contact with Dr Averill. I believe he knows IPF very well. If you are not sucessful in getting enrolled in the study, I might suggest scheduling an appointment with him anyway, he would provide you with a great second opinion. I will send you a direct message also, feel free to return it, happy to do what I can to help you.
Pete Besio