Re: Clinical Research Study Program

[Guest guest]

Wayne from Sher.... there are pirfenidone studies here in Oregon and I read postings on the board of others in studies.

I was considering accepting an invite into a study until I found it required an open lung bio! Not me. You didn't mention an ol-bio...did you need that before being accepted?

Hope you do well .

God bless.

Sher ipf 5-06

"Don't worry about tomorrow, God is already there"

Clinical Research Study Program

Hi, all. I am not really new to this group but have not been on for quite some time due to technical problems. However, I signed up a couple of days ago and am back again.I was diagnosed in June, 2004 with IPF. I have been doctoring with great doctors at University of Michigan Hospital in Ann Arbor, Michigan. IPF is progressing as might be expected. I am on oxygen but don't use it all the time.My main reason for contact at this time is to inform those who might be interested that I finally (long complicated story) was approved and entered a new Clinical Research Study Program yesterday. The drug company sponsoring the program is Intermune and the name of the program is CAPACITY. The medication is pirfenidone. I am receiving either 2400 mg/day or 1200 mg/day or a placebo. I don't know which I am receiving as it is a blind study. I am suppose to be on the program for about 60 weeks. I understand this has not been tried in the U.S. but has been tried in Japan and has been somewhat encouraging.If you have questions, please feel free to contact me. Look forward to hearing from some of you!!!Wayne

[Guest guest]

Sher:

Yes, I had the open lung biopsy in June, 2004. That was the

difinitive diagnosis for me.

Thanks for your reply.

Wayne

-- In Breathe-Support , " Sher K Bauman "

wrote:

>

> Wayne from Sher.... there are pirfenidone studies here in Oregon

and I read postings on the board of others in studies.

> I was considering accepting an invite into a study until I found

it required an open lung bio! Not me. You didn't mention an ol-

bio...did you need that before being accepted?

> Hope you do well .

> God bless.

> Sher ipf 5-06

>

>

>

> " Don't worry about tomorrow, God is already there "

> Clinical Research Study Program

>

>

> Hi, all. I am not really new to this group but have not been on

for

> quite some time due to technical problems. However, I signed up

a

> couple of days ago and am back again.

>

> I was diagnosed in June, 2004 with IPF. I have been doctoring

with

> great doctors at University of Michigan Hospital in Ann Arbor,

> Michigan. IPF is progressing as might be expected. I am on

oxygen

> but don't use it all the time.

>

> My main reason for contact at this time is to inform those who

might

> be interested that I finally (long complicated story) was

approved

> and entered a new Clinical Research Study Program yesterday. The

> drug

> company sponsoring the program is Intermune and the name of the

> program is CAPACITY. The medication is pirfenidone. I am

receiving

> either 2400 mg/day or 1200 mg/day or a placebo. I don't know

which

> I

> am receiving as it is a blind study. I am suppose to be on the

> program for about 60 weeks. I understand this has not been tried

in

> the U.S. but has been tried in Japan and has been somewhat

> encouraging.

>

> If you have questions, please feel free to contact me. Look

forward

> to hearing from some of you!!!

>

> Wayne

>

[Guest guest]

Wayne,

I am so happy to see you posting. I have been reading a lot about the success of Perifinidone in the Japenese studies. I pray that this is the answer to treatment for this horrid disease. I will also pray that you do well in the clinical trials here.

I am glad that you are getting excellent medical care. There are many places in this country where proper care is not available.

Take care and keep posting. We are glad to welcome you.

Hugs, Joyce PF 1997 Bronchiectasis 2004 Indiana > >> > Wayne from Sher.... there are pirfenidone studies here in Oregon > and I read postings on the board of others in studies.> > I was considering accepting an invite into a study until I found > it required an open lung bio! Not me. You didn't mention an ol-> bio...did you need that before being accepted?> > Hope you do well .> > God bless.> > Sher ipf 5-06> > > > > > > > "Don't worry about tomorrow, God is already there"> > Clinical Research Study Program> > > > > > Hi, all. I am not really new to this group but have not been on > for > > quite some time due to technical problems. However, I signed up > a > > couple of days ago and am back again.> > > > I was diagnosed in June, 2004 with IPF. I have been doctoring > with > > great doctors at University of Michigan Hospital in Ann Arbor, > > Michigan. IPF is progressing as might be expected. I am on > oxygen > > but don't use it all the time.> > > > My main reason for contact at this time is to inform those who > might > > be interested that I finally (long complicated story) was > approved > > and entered a new Clinical Research Study Program yesterday. The > > drug > > company sponsoring the program is Intermune and the name of the > > program is CAPACITY. The medication is pirfenidone. I am > receiving > > either 2400 mg/day or 1200 mg/day or a placebo. I don't know > which > > I > > am receiving as it is a blind study. I am suppose to be on the > > program for about 60 weeks. I understand this has not been tried > in > > the U.S. but has been tried in Japan and has been somewhat > > encouraging.> > > > If you have questions, please feel free to contact me. Look > forward > > to hearing from some of you!!!> > > > Wayne> >>

[Guest guest]

---

Joyce, Thanks for your kind words. I will look forward to talking

to you again.

Wayne

In Breathe-Support , " Joyce " wrote:

>

>

> Wayne,

>

> I am so happy to see you posting. I have been reading a lot about

the

> success of Perifinidone in the Japenese studies. I pray that this

is

> the answer to treatment for this horrid disease. I will also pray

that

> you do well in the clinical trials here.

>

> I am glad that you are getting excellent medical care. There are

many

> places in this country where proper care is not available.

>

> Take care and keep posting. We are glad to welcome you.

>

> Hugs, Joyce PF 1997 Bronchiectasis 2004 Indiana

>

> > >

> > > Wayne from Sher.... there are pirfenidone studies here in

Oregon

> > and I read postings on the board of others in studies.

> > > I was considering accepting an invite into a study until I

found

> > it required an open lung bio! Not me. You didn't mention an ol-

> > bio...did you need that before being accepted?

> > > Hope you do well .

> > > God bless.

> > > Sher ipf 5-06

> > >

> > >

> > >

> > > " Don't worry about tomorrow, God is already there "

> > > Clinical Research Study Program

> > >

> > >

> > > Hi, all. I am not really new to this group but have not been on

> > for

> > > quite some time due to technical problems. However, I signed up

> > a

> > > couple of days ago and am back again.

> > >

> > > I was diagnosed in June, 2004 with IPF. I have been doctoring

> > with

> > > great doctors at University of Michigan Hospital in Ann Arbor,

> > > Michigan. IPF is progressing as might be expected. I am on

> > oxygen

> > > but don't use it all the time.

> > >

> > > My main reason for contact at this time is to inform those who

> > might

> > > be interested that I finally (long complicated story) was

> > approved

> > > and entered a new Clinical Research Study Program yesterday.

The

> > > drug

> > > company sponsoring the program is Intermune and the name of the

> > > program is CAPACITY. The medication is pirfenidone. I am

> > receiving

> > > either 2400 mg/day or 1200 mg/day or a placebo. I don't know

> > which

> > > I

> > > am receiving as it is a blind study. I am suppose to be on the

> > > program for about 60 weeks. I understand this has not been

tried

> > in

> > > the U.S. but has been tried in Japan and has been somewhat

> > > encouraging.

> > >

> > > If you have questions, please feel free to contact me. Look

> > forward

> > > to hearing from some of you!!!

> > >

> > > Wayne

> > >

> >

>

[Guest guest]

Hi Wayne, I tried to get into the study here in Minnesota but my DLCO

was at 29% so I just missed it. I was really disappointed but there

really isn't anything I could have done different. Now I'm waiting to

get onto the transplant list (my last option). I was diagnosed in

Sept. '05 and placed on O2 24/7 Sept/ '06 at 2 lpm. I am not nor ever

been on any medication for this disease except for toprol for blood

pressure. I don't have high blood pressure nor do I have

hypertension. The doc. said my heart doesn't rest enough between beats

so he gave me this. I am still working part time and the office is on

the second floor with no elevators so I turn up the old O2 and climb

the stairs. Really huffing and puffing when I get there but I made it,

and that's where I stay until I go home. My boss has been really great

with all the time I have taken off to go to the transplant support

group that is every Monday which is one of the days I work. It's just

a two person office, my boss and me, so he has to pick up the load when

I'm not there. At least it's not a busy office. Well enough about me,

good luck with the study and I hope your getting the drug.

[Guest guest]

Hi Wayne,

I have been on Pirfenidone since the beginning of August 2006 through

Ohio State University Hospital. The first 8 weeks went well. Then I

broke out in a rash/hives on my legs, arms, waist. It itched

terribly. They took me off the meds for a month to allow the rash to

completely clear up. I went back on Pirfenidone the middle of

November. Since then, it has been going well. I'm at the rash/hive

point again, but so far, so good. No rash/hives. They said usually

if one has symptoms, it happens in a week or so. Mine was quite abit

longer. Yes, I also had the open lung (VAT) procedure. It wasn't as

bad as I expected. I was out of the hospital in three days without

any complications.

Now I am just waiting for OSU to call that they have a lung for me. I

was put on the transplant list December 15, 2006.

Hope all goes well for you on the clinical...think positive!

Greg S.

[Guest guest]

Sher:

My open lung biopsy went very well. I, of course, was totally out.

They did 3 small incisions, 2 on my left side and one on my back.

After they stabilized me, they sent me home the same day, about 1

1/2 hours away. The recovery pain wasn't real bad but did last much

longer than I expected, a few months. Hurt mostly when I coughed

and I do a quite a bit of coughing.

Wayne

In Breathe-Support , " Sher K Bauman "

wrote:

>

> How did the bio go??? Was it a tough surgery?

> Sher

> " Don't worry about tomorrow, God is already there "

> Clinical Research Study Program

> >

> >

> > Hi, all. I am not really new to this group but have not been

on

> for

> > quite some time due to technical problems. However, I signed

up

> a

> > couple of days ago and am back again.

> >

> > I was diagnosed in June, 2004 with IPF. I have been doctoring

> with

> > great doctors at University of Michigan Hospital in Ann Arbor,

> > Michigan. IPF is progressing as might be expected. I am on

> oxygen

> > but don't use it all the time.

> >

> > My main reason for contact at this time is to inform those who

> might

> > be interested that I finally (long complicated story) was

> approved

> > and entered a new Clinical Research Study Program yesterday.

The

> > drug

> > company sponsoring the program is Intermune and the name of

the

> > program is CAPACITY. The medication is pirfenidone. I am

> receiving

> > either 2400 mg/day or 1200 mg/day or a placebo. I don't know

> which

> > I

> > am receiving as it is a blind study. I am suppose to be on the

> > program for about 60 weeks. I understand this has not been

tried

> in

> > the U.S. but has been tried in Japan and has been somewhat

> > encouraging.

> >

> > If you have questions, please feel free to contact me. Look

> forward

> > to hearing from some of you!!!

> >

> > Wayne

> >

>

[Guest guest]

Hi Wayne,

Sounds like you had a VATS biopsy not OLB. OLB or open lung biopsy is

a 4 plus inch incision made on the right side of your chest(usually)

just below the pectoral muscle. The surgeon will remove 2 wedges of

tissue (1 ea from the middle and lower lobes.) In my case each wedge

was @ 5cm x 3cm x 1cm. After removing the tissue the surgeon will

install a temporary vent tube and seal the incision. The vent is to

prevent Pneumothorax (collapsed lung.) After 5 - 7 days, the lungs

have had a chance to " heal " and the risk of " PT " is reduced, the vent

is removed and the patient is sent home.

I thought my OLB was " relatively " pain free. I went home after 4 days.

The stitches/staples were removed after 3 weeks and I was cleared to

work both by the surgeon, my pulmo and the " Company " Dr after 8 weeks.

UIP/IPF/LCH 5.06/1.07

> > >

> > > Wayne from Sher.... there are pirfenidone studies here in

> Oregon

> > and I read postings on the board of others in studies.

> > > I was considering accepting an invite into a study until I

> found

> > it required an open lung bio! Not me. You didn't mention an ol-

> > bio...did you need that before being accepted?

> > > Hope you do well .

> > > God bless.

> > > Sher ipf 5-06

> > >

> > >

> > >

> > > " Don't worry about tomorrow, God is already there "

> > > Clinical Research Study Program

> > >

> > >

> > > Hi, all. I am not really new to this group but have not been

> on

> > for

> > > quite some time due to technical problems. However, I signed

> up

> > a

> > > couple of days ago and am back again.

> > >

> > > I was diagnosed in June, 2004 with IPF. I have been doctoring

> > with

> > > great doctors at University of Michigan Hospital in Ann Arbor,

> > > Michigan. IPF is progressing as might be expected. I am on

> > oxygen

> > > but don't use it all the time.

> > >

> > > My main reason for contact at this time is to inform those who

> > might

> > > be interested that I finally (long complicated story) was

> > approved

> > > and entered a new Clinical Research Study Program yesterday.

> The

> > > drug

> > > company sponsoring the program is Intermune and the name of

> the

> > > program is CAPACITY. The medication is pirfenidone. I am

> > receiving

> > > either 2400 mg/day or 1200 mg/day or a placebo. I don't know

> > which

> > > I

> > > am receiving as it is a blind study. I am suppose to be on the

> > > program for about 60 weeks. I understand this has not been

> tried

> > in

> > > the U.S. but has been tried in Japan and has been somewhat

> > > encouraging.

> > >

> > > If you have questions, please feel free to contact me. Look

> > forward

> > > to hearing from some of you!!!

> > >

> > > Wayne

> > >

> >

>

[Guest guest]

Yes, it ddoes appear my biopsy was different. Actually, I am quite

happy they did mine as they did because you guys sound a if you had

quite a recovery period. They took 2 or 3 sections of my lungs as

well. I was told at that time (2004) that the biopsy was the only

difinitive means of diagnosing IPF. It is really amazing how

treatments, medications etc. differ from hospital to hospital and

from state to state. Sure is a lot to learn about medical science

yet.

- In Breathe-Support , petevt@... wrote:

>

> Wayne,

> You must have had a different kind of open lung biopsy than I

did. I had one in August of 2006. They made a large incision in my

side and opened my ribs to take to lung out then took slices of the

lung. I was in the hospital for 9 days and had no complications.

My ribs still hurt when I cough. It was not pleasant but at least I

have a definitive diagnosis.

>

> Pete Van Tassel

> Pulmonary Fibrosis 8/2006

> Clinical Research Study Program

> > > >

> > > >

> > > > Hi, all. I am not really new to this group but have not been

> > on

> > > for

> > > > quite some time due to technical problems. However, I signed

> > up

> > > a

> > > > couple of days ago and am back again.

> > > >

> > > > I was diagnosed in June, 2004 with IPF. I have been

> > doctoring

> > > with

> > > > great doctors at University of Michigan Hospital in Ann

> > Arbor,

> > > > Michigan. IPF is progressing as might be expected. I am on

> > > oxygen

> > > > but don't use it all the time.

> > > >

> > > > My main reason for contact at this time is to inform those

> > who

> > > might

> > > > be interested that I finally (long complicated story) was

> > > approved

> > > > and entered a new Clinical Research Study Program yesterday.

> > The

> > > > drug

> > > > company sponsoring the program is Intermune and the name of

> > the

> > > > program is CAPACITY. The medication is pirfenidone. I am

> > > receiving

> > > > either 2400 mg/day or 1200 mg/day or a placebo. I don't know

> > > which

> > > > I

> > > > am receiving as it is a blind study. I am suppose to be on

> > the

> > > > program for about 60 weeks. I understand this has not been

> > tried

> > > in

> > > > the U.S. but has been tried in Japan and has been somewhat

> > > > encouraging.

> > > >

> > > > If you have questions, please feel free to contact me. Look

> > > forward

> > > > to hearing from some of you!!!

> > > >

> > > > Wayne

> > > >

> > >

> >

> >

> >

>

[Guest guest]

Hi guys,

My biopsy began as a Vats. The Thoracic surgeon found a mass of scar tissue between my lung and ribcage which was causing excruciating pain. They scraped that off (which relieved the pain, thank God). Then proceeded to do the biopsy. They did this through another incision which is the 4 inch cut below the breast. I was in CCU 9 days in terrible pain. I had a rough recovery. There was incisions from the Vats and more with the OLB. I looked like I had been in a knife fight.

I went in expecting to go home the next day. I got valuable information from the biopsy which has given me additional years to live. I would do it again...but I surely would not look forward to it.

Hugs, Joyce PF 1997 Bronchiectasis 2004 Indiana > > > > > > > > > > Wayne from Sher.... there are pirfenidone studies here in > > > Oregon > > > > and I read postings on the board of others in studies. > > > > > I was considering accepting an invite into a study until I > > > found > > > > it required an open lung bio! Not me. You didn't mention an ol-> > > > > bio...did you need that before being accepted? > > > > > Hope you do well . > > > > > God bless. > > > > > Sher ipf 5-06 > > > > > > > > > > > > > > > > > > > > "Don't worry about tomorrow, God is already there" > > > > > Clinical Research Study Program > > > > > > > > > > > > > > > Hi, all. I am not really new to this group but have not been > > > on > > > > for > > > > > quite some time due to technical problems. However, I signed > > > up > > > > a > > > > > couple of days ago and am back again. > > > > > > > > > > I was diagnosed in June, 2004 with IPF. I have been > > > doctoring > > > > with > > > > > great doctors at University of Michigan Hospital in Ann > > > Arbor, > > > > > Michigan. IPF is progressing as might be expected. I am on > > > > oxygen > > > > > but don't use it all the time. > > > > > > > > > > My main reason for contact at this time is to inform those > > > who > > > > might > > > > > be interested that I finally (long complicated story) was > > > > approved > > > > > and entered a new Clinical Research Study Program yesterday. > > > The > > > > > drug > > > > > company sponsoring the program is Intermune and the name of > > > the > > > > > program is CAPACITY. The medication is pirfenidone. I am > > > > receiving > > > > > either 2400 mg/day or 1200 mg/day or a placebo. I don't know > > > > which > > > > > I > > > > > am receiving as it is a blind study. I am suppose to be on > > > the > > > > > program for about 60 weeks. I understand this has not been > > > tried > > > > in > > > > > the U.S. but has been tried in Japan and has been somewhat > > > > > encouraging. > > > > > > > > > > If you have questions, please feel free to contact me. Look > > > > forward > > > > > to hearing from some of you!!! > > > > > > > > > > Wayne > > > > > > > > > > > > > > > > > >> >>