Guest guest Posted April 9, 2008 Report Share Posted April 9, 2008 Dilwala, Not sure which study's your talking about the build 3 study I thought was not recruiting anymore and as far as the pred,aza,nac study it has not started recruiting It will soon though, that is the one Im waiting to join in on it is called the panther study here is the info: http://clinicaltrials.gov/ct2/show/NCT00650091?term=iPF. & recr=Open & rank=4 how old are you may I ask? and how long did you smoke? when I was approached with the question of get a biopsy or don't get a biopsy my reasoning was that unless you are going to do nothing but take what they give you pred. imuran etc. (that don't have much affect) I need to get the biopsy done so I could participate in the trials (most of which you need to be diagnosed) I wanted to help with a cure for this disease in any way that I could and if that includes being a guinea pig oh well. that is just my opinion and you know what they say about opinions they are like _ _ _holes everyones got em Brett Bowser familial UIP/IPF 11/07 40 Mi. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2008 Report Share Posted April 9, 2008 Bret, You're correct. I was told that the study (Build 3) had been closed. Someone dropped out. The person coordinating the study was in the panel. They all felt that I would be a good fit. It was offered to me ~ten days ago. I turned 47 in Dec 07. I smoked (less than pack a day) from early 80's – 1995. My kids were born in 1995. I got tired of going outside to smoke so I quit. I did not smoke until 8/2004. A childhood friend visited the states. He smoked. One of his wishes was to indulge in some ny . So we drank a little and I smoked one cig. From then until 2/2/2008, I have smoked ~3-10 cigs a week. I'm done with smoking though. I'm glad that biopsy is over with. However, I wish they had told me about the Phantom pain. I was worried when Bruce told me that it will last longer than a month. Sure enough, it is still with me. Another big reason for biopsy was the statement `that early detection will result in better treatment " . I will find out if it is true. I'm not as brave as you about the clinical trials though. The nurse has me convinced to opt for pred. She tells me that I have very little fibrosis and a lot of inflammation. Pred, she states, is God's gift to cure inflammation? > > Dilwala, > > Not sure which study's your talking about > the build 3 study I thought was not recruiting anymore > and as far as the pred,aza,nac study it has not started recruiting > It will soon though, that is the one Im waiting to join in on > it is called the panther study here is the info: > http://clinicaltrials.gov/ct2/show/NCT00650091? term=iPF. & recr=Open & rank=4 > > how old are you may I ask? > and how long did you smoke? > > when I was approached with the question of get a biopsy or don't get a > biopsy > my reasoning was that unless you are going to do nothing but take what > they give you > pred. imuran etc. (that don't have much affect) I need to get the > biopsy done > so I could participate in the trials (most of which you need to be > diagnosed) > I wanted to help with a cure for this disease in any way that I could > and if > that includes being a guinea pig oh well. > that is just my opinion and you know what they say about opinions > they are like _ _ _holes everyones got em > > > > Brett Bowser > familial UIP/IPF 11/07 40 Mi. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2008 Report Share Posted April 9, 2008 I still get some shooting pain once in a whilethe big thing for me was the numbness around the three incisionsit was weird, it was both numb and painful to the touch at the same timethe doc told me it was just some nerve damage and would take awhile to heal upit finally did and now im just left with three scares how many kids do you have ?post some pics of em I would love to see themI have posted a few pic's of my pride and joy elizabethshe is 14-month's now, growing up to fastnow that the weather is getting warmer all she wants to do is run around outside ...on the driveway (she isn't to sure what to make of grass)she was scared of snow as wellBret,You're correct. I was told that the study (Build 3) had been closed. Someone dropped out. The person coordinating the study was in the panel. They all felt that I would be a good fit. It was offered to me ~ten days ago. I turned 47 in Dec 07. I smoked (less than pack a day) from early 80's – 1995. My kids were born in 1995. I got tired of going outside to smoke so I quit. I did not smoke until 8/2004. A childhood friend visited the states. He smoked. One of his wishes was to indulge in some ny . So we drank a little and I smoked one cig. From then until 2/2/2008, I have smoked ~3-10 cigs a week. I'm done with smoking though. I'm glad that biopsy is over with. However, I wish they had told me about the Phantom pain. I was worried when Bruce told me that it will last longer than a month. Sure enough, it is still with me.Another big reason for biopsy was the statement `that early detection will result in better treatment". I will find out if it is true. I'm not as brave as you about the clinical trials though. The nurse has me convinced to opt for pred. She tells me that I have very little fibrosis and a lot of inflammation. Pred, she states, is God's gift to cure inflammation?>> Dilwala,> > Not sure which study's your talking about> the build 3 study I thought was not recruiting anymore> and as far as the pred,aza,nac study it has not started recruiting> It will soon though, that is the one Im waiting to join in on> it is called the panther study here is the info:> http://clinicaltrials.gov/ct2/show/NCT00650091?term=iPF. & recr=Open & rank=4> > how old are you may I ask?> and how long did you smoke?> > when I was approached with the question of get a biopsy or don't get a > biopsy> my reasoning was that unless you are going to do nothing but take what > they give you> pred. imuran etc. (that don't have much affect) I need to get the > biopsy done> so I could participate in the trials (most of which you need to be > diagnosed)> I wanted to help with a cure for this disease in any way that I could > and if> that includes being a guinea pig oh well.> that is just my opinion and you know what they say about opinions> they are like _ _ _holes everyones got em> > > > Brett Bowser> familial UIP/IPF 11/07 40 Mi.> brett bowserbrett@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2008 Report Share Posted April 9, 2008 I had my VATS in mid January and the pain is nearly gone, but now the incisions itch so bad it drives me crazy!!! Carobrett bowser wrote: I still get some shooting pain once in a while the big thing for me was the numbness around the three incisions it was weird, it was both numb and painful to the touch at the same time the doc told me it was just some nerve damage and would take awhile to heal up it finally did and now im just left with three scares how many kids do you have ? post some pics of em I would love to see them I have posted a few pic's of my pride and joy elizabeth she is 14-month's now, growing up to fast now that the weather is getting warmer all she wants to do is run around outside ...on the driveway (she isn't to sure what to make of grass) she was scared of snow as well Bret,You're correct. I was told that the study (Build 3) had been closed. Someone dropped out. The person coordinating the study was in the panel. They all felt that I would be a good fit. It was offered to me ~ten days ago. I turned 47 in Dec 07. I smoked (less than pack a day) from early 80's – 1995. My kids were born in 1995. I got tired of going outside to smoke so I quit. I did not smoke until 8/2004. A childhood friend visited the states. He smoked. One of his wishes was to indulge in some ny . So we drank a little and I smoked one cig. From then until 2/2/2008, I have smoked ~3-10 cigs a week. I'm done with smoking though. I'm glad that biopsy is over with. However, I wish they had told me about the Phantom pain. I was worried when Bruce told me that it will last longer than a month. Sure enough, it is still with me.Another big reason for biopsy was the statement `that early detection will result in better treatment". I will find out if it is true. I'm not as brave as you about the clinical trials though. The nurse has me convinced to opt for pred. She tells me that I have very little fibrosis and a lot of inflammation. Pred, she states, is God's gift to cure inflammation?>> Dilwala,> > Not sure which study's your talking about> the build 3 study I thought was not recruiting anymore> and as far as the pred,aza,nac study it has not started recruiting> It will soon though, that is the one Im waiting to join in on> it is called the panther study here is the info:> http://clinicaltrials.gov/ct2/show/NCT00650091?term=iPF. & recr=Open & rank=4> > how old are you may I ask?> and how long did you smoke?> > when I was approached with the question of get a biopsy or don't get a > biopsy> my reasoning was that unless you are going to do nothing but take what > they give you> pred. imuran etc. (that don't have much affect) I need to get the > biopsy done> so I could participate in the trials (most of which you need to be > diagnosed)> I wanted to help with a cure for this disease in any way that I could > and if> that includes being a guinea pig oh well.> that is just my opinion and you know what they say about opinions> they are like _ _ _holes everyones got em> > > > Brett Bowser> familial UIP/IPF 11/07 40 Mi.> brett bowser brettvectordist CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi __________________________________________________Do You Yahoo!?Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com Quote Link to comment Share on other sites More sharing options...
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