Re: Information needed

[Guest guest]

Joyce R. I was on cytoxan for 5 months but got really sick. They wanted to put

me in in a trial for Gleevec but I didnt qualify . I think cellcept is the next

drug they want me to try. I take 10 mgs of prednisone right now and have been on

it for 2 yr 2 months.

IPF scleroderma Raynauds Sjogrens 2/07 IL

[Guest guest]

Friends/kike...

What is the general feeling about clinical trials ? It seems like a good thing in which to participate, assuming you are the one getting the trial drug. Can one get worse from a trial or is the downside merely that one doesn't get better/ fibrosis slows.? Any comments or experience ?

Subject: Re: Information neededTo: Breathe-Support Date: Sunday, April 12, 2009, 11:52 PM

Joyce R. I was on cytoxan for 5 months but got really sick. They wanted to put me in in a trial for Gleevec but I didnt qualify . I think cellcept is the next drug they want me to try. I take 10 mgs of prednisone right now and have been on it for 2 yr 2 months. IPF scleroderma Raynauds Sjogrens 2/07 IL

[Guest guest]

The feelings and opinions are varied. Many participate just to have a

ray of hope. Others do so in the hope at least of something for future

PF'ers. Generally the trials are very narrow in selection criteria and

eligibility is a big issues.

To me, it depends on the trial, as to whether I'd have an interest. For

instance, I would have had no hesitancy participating in the Sildenafil

or Bosentan trials because both those drugs are approved for other uses

and are likely to provide some overall benefit, even if not directly on

the disease, with minimal side effects.

As to some others where the drugs have more side effects, it becomes

hope versus waste of time if on placebo versus side effects. I probably

wouldn't.

When it comes to something like Pirfenidone, I wouldn't have because I

have such a strong mistrust of the manufacturer, Intermune. This is

based on their previous actions with Actimmune which led to deaths and

to serious side effects for others. Some of their promotional activities

were criminal. So, I'm not trusting my life to these people. They

continue to mislead the public even today with the pictures they are

painting of the trial results, inconsistent with the results themselves.

I wouldn't have qualified for the Pirfenidone trial anyway as too far

progressed the day I was diagnosed. I wouldn't have qualified for

Revatio because of the suspicion of possibly an underlying autoimmune

disease. I actually went to a participating center for that trial.

I think there can be other benefits in trials. For those in the Revatio

trial they're getting a good exercise program either way.

I think the issue I have is " don't bank your life on the trial. " What I

mean by that is don't get so invested that it rules your life to the

extent of not living as fully as you otherwise would have. Don't let it

be an instrument that destroys you if it doesn't work, but rather one

you don't expect much out of so its a miracle if it does. Don't give up

your life to be a clinical trial subject, but just let it be a little

sideline you pursue as an adjunct to your life.

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> From: kiki boettin netwiz3@...

> Subject: Re: Information needed

> To: Breathe-Support

> Date: Sunday, April 12, 2009, 11:52 PM

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> Joyce R. I was on cytoxan for 5 months but got really sick. They

wanted to put me in in a trial for Gleevec but I didnt qualify . I think

cellcept is the next drug they want me to try. I take 10 mgs of

prednisone right now and have been on it for 2 yr 2 months.

> IPF scleroderma Raynauds Sjogrens 2/07 IL

>

[Guest guest]

Bruce..

That's pretty much what I was thinking. I think it would be naive to think one is going to participate in a "life saving " trial. It probably happens once in a 100 years but I would think the most likely result would be nothing . Some day someone is going to find a treatment that slows the growth of the fiber without terrible side effects, but that may be years away. I could imagine that a therapy that slows or stops the growth of cancer cells would be a comparable goal. Thanks for your input. I'll keep you posted.

Andy

Subject: Re: Information neededTo: Breathe-Support Date: Monday, April 13, 2009, 9:48 AM

The feelings and opinions are varied. Many participate just to have aray of hope. Others do so in the hope at least of something for futurePF'ers. Generally the trials are very narrow in selection criteria andeligibility is a big issues.To me, it depends on the trial, as to whether I'd have an interest. Forinstance, I would have had no hesitancy participating in the Sildenafilor Bosentan trials because both those drugs are approved for other usesand are likely to provide some overall benefit, even if not directly onthe disease, with minimal side effects.As to some others where the drugs have more side effects, it becomeshope versus waste of time if on placebo versus side effects. I probablywouldn't.When it comes to something like Pirfenidone, I wouldn't have because Ihave such a strong mistrust of the manufacturer, Intermune. This isbased on their previous actions with

Actimmune which led to deaths andto serious side effects for others. Some of their promotional activitieswere criminal. So, I'm not trusting my life to these people. Theycontinue to mislead the public even today with the pictures they arepainting of the trial results, inconsistent with the results themselves.I wouldn't have qualified for the Pirfenidone trial anyway as too farprogressed the day I was diagnosed. I wouldn't have qualified forRevatio because of the suspicion of possibly an underlying autoimmunedisease. I actually went to a participating center for that trial.I think there can be other benefits in trials. For those in the Revatiotrial they're getting a good exercise program either way.I think the issue I have is "don't bank your life on the trial." What Imean by that is don't get so invested that it rules your life to theextent of not living as fully as you otherwise would

have. Don't let itbe an instrument that destroys you if it doesn't work, but rather oneyou don't expect much out of so its a miracle if it does. Don't give upyour life to be a clinical trial subject, but just let it be a littlesideline you pursue as an adjunct to your life.>>> Subject: Re: Information needed> To: Breathe-Support@ yahoogroups. com> Date: Sunday, April 12, 2009, 11:52 PM>>>>>>>>>> Joyce R. I was on cytoxan for 5 months but got really sick. Theywanted to put me in in a trial for Gleevec but I didnt qualify . I thinkcellcept is the next drug they want me to try. I take 10 mgs ofprednisone right now and have been on it for 2 yr 2 months.> IPF scleroderma Raynauds Sjogrens 2/07 IL>

[Guest guest]

, are you on oxygen? If so did they tell you how much of your lung was affected? I am scared to death that they will tell me I have it and frankly I don't want it! I heard from Jewish yesterday and they told me to expect a call from St. 's hospital in Phoenix to set up an appointment for my biopsy and I am quite nervous about this. I have never had any kind of operation-accpet I had my tonsils out when I was 3. LOL The whole thought that someone is going to cut into me and my lung kind of disturbs me. I don't even know if they do it in one lung or both. Did you have a biopsy? Joyce Rudy AZ

Re: Information needed

Joyce R. I was on cytoxan for 5 months but got really sick. They wanted to put me in in a trial for Gleevec but I didnt qualify . I think cellcept is the next drug they want me to try. I take 10 mgs of prednisone right now and have been on it for 2 yr 2 months. IPF scleroderma Raynauds Sjogrens 2/07 IL

[Guest guest]

Joyce ,try not to worry , technology today is far better than it used to be the surgery's of today are far less invasive as they used to be as well and they will only take tissuefrom one lung because when they take the tissue the lung is deflated and you are breathing from/with the other and help from a resporater and the insisions are very small3-cuts no bigger than an inch at most so don't worry you'll be fine . Brett , are you on oxygen? If so did they tell you how much of your lung was affected? I am scared to death that they will tell me I have it and frankly I don't want it! I heard from Jewish yesterday and they told me to expect a call from St. 's hospital in Phoenix to set up an appointment for my biopsy and I am quite nervous about this. I have never had any kind of operation-accpet I had my tonsils out when I was 3. LOL The whole thought that someone is going to cut into me and my lung kind of disturbs me. I don't even know if they do it in one lung or both. Did you have a biopsy? Joyce Rudy AZ Re: Information needed Joyce R. I was on cytoxan for 5 months but got really sick. They wanted to put me in in a trial for Gleevec but I didnt qualify . I think cellcept is the next drug they want me to try. I take 10 mgs of prednisone right now and have been on it for 2 yr 2 months. IPF scleroderma Raynauds Sjogrens 2/07 IL Brett Bowser 40 MI.familial UIP/IPF 11/07 stage 4 lung cancer 7/08

[Guest guest]

Thank you Brett. You have relieved my mind. I had visions of a big cut and then cutting into my lung and some kind of plastic pipe coming out of my chest! I only wish I could drive home after they reliease me from the hosptial. Everyone here says no, you can't do that. I live about 200 miles from the hospital and am having a hell of a time finding someone to drive me and pick me up! JoyceRudy AZ

Re: Information needed

Joyce R. I was on cytoxan for 5 months but got really sick. They wanted to put me in in a trial for Gleevec but I didnt qualify . I think cellcept is the next drug they want me to try. I take 10 mgs of prednisone right now and have been on it for 2 yr 2 months. IPF scleroderma Raynauds Sjogrens 2/07 IL

Brett Bowser 40 MI.

familial UIP/IPF 11/07

stage 4 lung cancer 7/08

[Guest guest]

Joyce R I wasn't on oxygen until 12/29/08. I landed in the hospital for news

years because I got a urinary tract infection that jumped to my blood and then I

got pneumonia so oxygen is new to me. I hope you dint have scleroderma also

..but many people live a long life with very few flare ups.It is my lower lobes

in both lungs that were affected . I am not sure how much damaged was done this

last bout. I had a VATS and was diagnosed with IPF. I hope your biopsy goes

smoothly .

IPF 2/07 Scleroderma Sjogren raynauds IL

[Guest guest]

Joyce R I wasn't on oxygen until 12/29/08. I landed in the hospital for news

years because I got a urinary tract infection that jumped to my blood and then I

got pneumonia so oxygen is new to me. I hope you dint have scleroderma also

..but many people live a long life with very few flare ups.It is my lower lobes

in both lungs that were affected . I am not sure how much damaged was done this

last bout. I had a VATS and was diagnosed with IPF. I hope your biopsy goes

smoothly .

IPF 2/07 Scleroderma Sjogren raynauds IL

[Guest guest]

Brett!!! Huge apology for overlooking your wonderful picture you sent. I thanked you for the pic and then said only two had called me or whatever. My brain is so damn twisted.

I'm feeling better today! Back on Cymbalta (one of my dr offered it to me as samples...said not to worry about it ...how nice!)

I'm walking w/o cane now and feeling stronger.

Thanks to all who contacted me.

WALLY YOU ARE A SWEETHEART!

I do notice my sats are lower than usual. I've had down in the 70s, 80s. I don't usually get these dips this low. I'm wearing O2 most all day now.

Hope your breakfast was yum-oh ML. Did she let you have any Earl?

Love ya all. I'm off and on here.........................

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

Re: Information needed

Joyce R. I was on cytoxan for 5 months but got really sick. They wanted to put me in in a trial for Gleevec but I didnt qualify . I think cellcept is the next drug they want me to try. I take 10 mgs of prednisone right now and have been on it for 2 yr 2 months. IPF scleroderma Raynauds Sjogrens 2/07 IL

Brett Bowser 40 MI.

familial UIP/IPF 11/07

stage 4 lung cancer 7/08

[Guest guest]

Brett!!! Huge apology for overlooking your wonderful picture you sent. I thanked you for the pic and then said only two had called me or whatever. My brain is so damn twisted.

I'm feeling better today! Back on Cymbalta (one of my dr offered it to me as samples...said not to worry about it ...how nice!)

I'm walking w/o cane now and feeling stronger.

Thanks to all who contacted me.

WALLY YOU ARE A SWEETHEART!

I do notice my sats are lower than usual. I've had down in the 70s, 80s. I don't usually get these dips this low. I'm wearing O2 most all day now.

Hope your breakfast was yum-oh ML. Did she let you have any Earl?

Love ya all. I'm off and on here.........................

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

Re: Information needed

Joyce R. I was on cytoxan for 5 months but got really sick. They wanted to put me in in a trial for Gleevec but I didnt qualify . I think cellcept is the next drug they want me to try. I take 10 mgs of prednisone right now and have been on it for 2 yr 2 months. IPF scleroderma Raynauds Sjogrens 2/07 IL

Brett Bowser 40 MI.

familial UIP/IPF 11/07

stage 4 lung cancer 7/08

[Guest guest]

Sher: So glad to hear you are feeling better. I did send an e-mail a couple of days ago but (as happens NOT infrequently), it went off into cyberspace, never to be seen again. Still praying for you.

B

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

To: Breathe-Support Sent: Wednesday, April 15, 2009 12:53:35 PMSubject: Re: Re: Information needed

Brett!!! Huge apology for overlooking your wonderful picture you sent. I thanked you for the pic and then said only two had called me or whatever. My brain is so damn twisted.

I'm feeling better today! Back on Cymbalta (one of my dr offered it to me as samples...said not to worry about it ...how nice!)

I'm walking w/o cane now and feeling stronger.

Thanks to all who contacted me.

WALLY YOU ARE A SWEETHEART!

I do notice my sats are lower than usual. I've had down in the 70s, 80s. I don't usually get these dips this low. I'm wearing O2 most all day now.

Hope your breakfast was yum-oh ML. Did she let you have any Earl?

Love ya all. I'm off and on here........ ......... ........

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

Re: Information needed

Joyce R. I was on cytoxan for 5 months but got really sick. They wanted to put me in in a trial for Gleevec but I didnt qualify . I think cellcept is the next drug they want me to try. I take 10 mgs of prednisone right now and have been on it for 2 yr 2 months. IPF scleroderma Raynauds Sjogrens 2/07 IL

Brett Bowser 40 MI.

familial UIP/IPF 11/07

stage 4 lung cancer 7/08

[Guest guest]

Thanks Barbara. The morning started out pretty good. Kinda downhill since. I'm watching TV and reading.

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

Re: Information needed

Joyce R. I was on cytoxan for 5 months but got really sick. They wanted to put me in in a trial for Gleevec but I didnt qualify . I think cellcept is the next drug they want me to try. I take 10 mgs of prednisone right now and have been on it for 2 yr 2 months. IPF scleroderma Raynauds Sjogrens 2/07 IL

Brett Bowser 40 MI.

familial UIP/IPF 11/07

stage 4 lung cancer 7/08