Re: Ken Baker Pirfenidone trial update

[Guest guest]

Ken

Whatever the reason, your PFT's are sure good news. I wish I'd had some

PFT's a few years before diagnosis just to have some that were close to

even your worse. Now your current ones, I can't imagine. All we can do

is hope for your continued good fortune. It will be interesting to find

out the study results when that time comes.

>

> I'm Ken Baker age 66 living in New Hampshire, diagnosed with UIP in

> 12/05 via x-ray and HRCT. Confirmed via VATS biopsy in 10/06. Enrolled

> in Pirfenidone Capacity Clinical Trial 2/07 - 8/08. Entered

Pirfenidone

> Open Label Clinical Trial 9/08.

>

> I had my Pirfenidone open label study 12 week followup appt at Beth

> Israel Deaconess Medical Center in Boston on Monday. This appt

included

> the PFT and my difussion was improved to the best it has been since

> diagnosis in Dec '05. I completed the Pirfenidone Capacity study back

> in Aug '08 and started the openlabel study in Sept '08. I'm on the

real

> medicine in the open label study. I'm told I'll discover if I was on

> placebo or real med in the capacity study sometime in early 2009. I'm

> still only on oxygen when I'm on the treadmill.

>

> For those who watch their PFT (percentage of expected) numbers my

forced

> vital capacity (FVC) has ranged from a low of 79% to curent high of

92%.

> My 1 second blow rate (FEV1) has ranged from 84% to current 108%. My

> diffusion (DsbHb) has ranged from low of 55% to currrent 74%.

>

> Ken Baker 66 UIP/IPF 12/05 New Hampshire

>

[Guest guest]

Ken ... this is great news for you! Thanks for being in the trial, we all learn.

Happy holidays.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Ken Baker Pirfenidone trial update

I'm Ken Baker age 66 living in New Hampshire, diagnosed with UIP in 12/05 via x-ray and HRCT. Confirmed via VATS biopsy in 10/06. Enrolled in Pirfenidone Capacity Clinical Trial 2/07 - 8/08. Entered Pirfenidone Open Label Clinical Trial 9/08. I had my Pirfenidone open label study 12 week followup appt at Beth Israel Deaconess Medical Center in Boston on Monday. This appt included the PFT and my difussion was improved to the best it has been since diagnosis in Dec '05. I completed the Pirfenidone Capacity study back in Aug '08 and started the openlabel study in Sept '08. I'm on the real medicine in the open label study. I'm told I'll discover if I was on placebo or real med in the capacity study sometime in early 2009. I'm still only on oxygen when I'm on the treadmill. For those who watch their PFT (percentage of expected) numbers my forced vital capacity (FVC) has ranged from a low of 79% to curent high of 92%. My 1 second blow rate (FEV1) has ranged from 84% to current 108%. My diffusion (DsbHb) has ranged from low of 55% to currrent 74%. Ken Baker 66 UIP/IPF 12/05 New Hampshire

[Guest guest]

Hi Ken, What wonderful news and numbers. I don't remember the information about who could take the pirfenidone, if it is just used on early stages or later stages. I am certainly not on the top of this disease and would take it if it is available. I see my Doc the 14th of Jan and will discuss it with her. The x-ray I just had done was pretty much all scaring. The Doc said if I did have pneumonia it was behind the scaring. I am pretty sure from the way I have to live now that I am pretty far advanced. Just wondering about the pirfenidone.I am so happy for you. God has blessed you. Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." 

[Guest guest]

Peggy

First, the pirfenidone is only available in a trial. Second, however, it

is only being evaluated for those in very early stages. I was ineligible

on the day of my diagnosis. So you would certainly be ineligible for the

clinical trials of pirfenidone. Third, they are no longer recruiting

participants.

>

> Hi Ken, What wonderful news and numbers. I don't remember the

> information about who could take the pirfenidone, if it is just used

> on early stages or later stages. I am certainly not on the top of

> this disease and would take it if it is available. I see my Doc the

> 14th of Jan and will discuss it with her. The x-ray I just had done

> was pretty much all scaring. The Doc said if I did have pneumonia it

> was behind the scaring. I am pretty sure from the way I have to live

> now that I am pretty far advanced. Just wondering about the

pirfenidone.

>

> I am so happy for you. God has blessed you.

>

>

> Love & Prayers, Peggy

> Florida, IPF/UIP 2004

>

> " I believe that friends are quiet angels who lift us to our feet,

> when our wings have trouble remembering how to fly. "

>

>

> 

>

[Guest guest]

Peggy

First, the pirfenidone is only available in a trial. Second, however, it

is only being evaluated for those in very early stages. I was ineligible

on the day of my diagnosis. So you would certainly be ineligible for the

clinical trials of pirfenidone. Third, they are no longer recruiting

participants.

>

> Hi Ken, What wonderful news and numbers. I don't remember the

> information about who could take the pirfenidone, if it is just used

> on early stages or later stages. I am certainly not on the top of

> this disease and would take it if it is available. I see my Doc the

> 14th of Jan and will discuss it with her. The x-ray I just had done

> was pretty much all scaring. The Doc said if I did have pneumonia it

> was behind the scaring. I am pretty sure from the way I have to live

> now that I am pretty far advanced. Just wondering about the

pirfenidone.

>

> I am so happy for you. God has blessed you.

>

>

> Love & Prayers, Peggy

> Florida, IPF/UIP 2004

>

> " I believe that friends are quiet angels who lift us to our feet,

> when our wings have trouble remembering how to fly. "

>

>

> 

>

[Guest guest]

I thought that a terminal patient could try a drug that has been through the second phase.  Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." 

[Guest guest]

Peggy

That is not a given. There has been much discussion and legal battling

on the issue. The FDA does agree to compassionate treatment in certain

circumstances. Some does take place between manufacturers and

individuals. However, the Supreme Court has also ruled that there is no

constitutional right to such drugs. Many of the legal fights have been

for single individuals.

Just before approval the FDA does sometimes make drugs available to

groups of patients through the " compassionate use " theory. Most of these

are drugs that have successfully completed Phase III trials.

So the possibility does exist but isn't automatic and I am not aware of

Pirfenidone being approved or used in this matter. As to someone at your

stage or mine, the drug has not been through a trial for us, so I don't

know if that would impact it being used under compassionate use programs

for terminal patients or not.

>

>

> I thought that a terminal patient could try a drug that has been

> through the second phase.

>

> Love & Prayers, Peggy

> Florida, IPF/UIP 2004

>

> " I believe that friends are quiet angels who lift us to our feet,

> when our wings have trouble remembering how to fly. "

>

>

> 

>

[Guest guest]

Wow Ken,

What great news! Thank you so much for keeping us updated. R. (52) Sarcoid/PF 3/2006 Carlsbad, California

Subject: Ken Baker Pirfenidone trial updateTo: Breathe-Support Date: Tuesday, December 9, 2008, 6:28 AM

I'm Ken Baker age 66 living in New Hampshire, diagnosed with UIP in 12/05 via x-ray and HRCT. Confirmed via VATS biopsy in 10/06. Enrolled in Pirfenidone Capacity Clinical Trial 2/07 - 8/08. Entered Pirfenidone Open Label Clinical Trial 9/08. I had my Pirfenidone open label study 12 week followup appt at Beth Israel Deaconess Medical Center in Boston on Monday. This appt included the PFT and my difussion was improved to the best it has been since diagnosis in Dec '05. I completed the Pirfenidone Capacity study back in Aug '08 and started the openlabel study in Sept '08. I'm on the real medicine in the open label study. I'm told I'll discover if I was on placebo or real med in the capacity study sometime in early 2009. I'm still only on oxygen when I'm on the treadmill. For those who watch their PFT (percentage of expected) numbers my forced vital capacity (FVC) has ranged from a

low of 79% to curent high of 92%. My 1 second blow rate (FEV1) has ranged from 84% to current 108%. My diffusion (DsbHb) has ranged from low of 55% to currrent 74%. Ken Baker 66 UIP/IPF 12/05 New Hampshire