Re: Sher-NSIP

[Guest guest]

I am doing everything I can do to make crazy.. I want to be sure if this monster gets me he won't forgetme..... LOL  But I am doing really well for the shape I'm in. I sit a lot. I Just don't have the ump or air to go.I do push when I need to but that is all of us with this monster.. push, push.. I am tired, not of it all mind you just tired. I think I am goin to sleep in the other room tonight and see if I feel more rested in the AM.Yes UIP/IPF is a strain of Fibrosis. We all have strains that just look a little different. NO treatment for them, so there it is. I don't worry about it over much. I still have peace in my heart about it. Love and Prayers, PeggyIPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up." Peggy...now the light dawns! The UIP/IPF means that UIP is a strain of IPF! As NSIP/IPF is a strain of...........finally it makes sense.How are you feeling Peggy? You talk so little about yourself...I really want to know ladybug.     Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!  Re: Sher-NSIP, I read that you are confused about what type of IPF you have--IPF, NSIP, etc. plus honeycombing.  I had the same issue.  For about 4 years, mine was diagnosed NSIP.  then I took my biopsy slides to a major ILD center (this year) and then I was diagnosed UIP(honeycombing) IPF.  My doctor told me that there have been newer advances for the pathlogist in reading the biopsy slides.  I am going to try and qualify for the STEP Trial in two weeks and the nurse mentioned to me that my biopsy slides would have to be looked at AGAIN for other characteristics that have been determined by the Trial.  Whew!  I know it is confusing.  Maybe different parts of our lungs can have different kinds of pulmonary fibrosis!  (This statement came from me!)  Toodles!  Jane UIP/IPF formerly NSIP 12/1998 Dalton, Georgia aka pianolady_musicgirl> > >> > > Sher,> > > I'm happy to hear the doctors have switched your diagnosis. NSIP> > is definitely preferable to IPF, the life expectancy is much longer> > and as a bonus, it does not always progress. As a matter of fact,> > Dr. on at Duke just told me last month that he's seen patients> > with NSIP who have been "stable for decades." I mean I know that my> > experience may be different but anything that gives us hope is> > helpful!> > > Have they switched your dx based on the behavior of the disease or> > also on the ct scan results? NSIP is usually very identifiable by CT> > scan. To identify the type of NSIP (fibrotic, cellular or mixed) you> > would need a biopsy. But at this point it probably doesn't matter as> > long as your stable. I understand why you wouldn't put yourself> > through that. I don't regret my biopsy but I totally get why you've> > chosen not to go down that road.> > > In the meantime, celebrate stability!! Stable is my happy word!!> > > Beth> > > Age 48 Fibrotic NSIP 06/06> > >> > > Change everything. Love and Forgive> > >> >>CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi__________________________________________________

[Guest guest]

Peggy... I seriously doubt "will forget you" you ninny!

I lack the up/air to go too. Hannah is staying w/us this weekend and has a Lacrosse game this afternoon about 35 miles away. I know I SHOULD go, but I really don't want to. She and grampa will go, I might.

I'm glad you have continued peace in your heart. Nothing can hurt us with that Peace.

Keep on keepin' on friend.

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

Re: Sher-NSIP

, I read that you are confused about what type of IPF you have--IPF, NSIP, etc. plus honeycombing. I had the same issue. For about 4 years, mine was diagnosed NSIP. then I took my biopsy slides to a major ILD center (this year) and then I was diagnosed UIP(honeycombing) IPF. My doctor told me that there have been newer advances for the pathlogist in reading the biopsy slides. I am going to try and qualify for the STEP Trial in two weeks and the nurse mentioned to me that my biopsy slides would have to be looked at AGAIN for other characteristics that have been determined by the Trial. Whew! I know it is confusing. Maybe different parts of our lungs can have different kinds of pulmonary fibrosis! (This statement came from me!) Toodles! Jane UIP/IPF formerly NSIP 12/1998 Dalton, Georgia aka pianolady_musicgirl

> > >> > > Sher,> > > I'm happy to hear the doctors have switched your diagnosis. NSIP> > is definitely preferable to IPF, the life expectancy is much longer> > and as a bonus, it does not always progress. As a matter of fact,> > Dr. on at Duke just told me last month that he's seen patients> > with NSIP who have been "stable for decades." I mean I know that my> > experience may be different but anything that gives us hope is> > helpful!> > > Have they switched your dx based on the behavior of the disease or> > also on the ct scan results? NSIP is usually very identifiable by CT> > scan. To identify the type of NSIP (fibrotic, cellular or mixed) you> > would need a biopsy. But at this point it probably doesn't matter as> > long as your stable. I understand why you wouldn't put yourself> > through that. I don't regret my biopsy but I totally get why you've> > chosen not to go down that road.> > > In the meantime, celebrate stability!! Stable is my happy word!!> > > Beth> > > Age 48 Fibrotic NSIP 06/06> > >> > > Change everything. Love and Forgive> > >> >>

CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi

__________________________________________________

[Guest guest]

Ahhh gee, thanks ! I had my head in the sand with Ze....

lol.

My Dr. call my newly Dx NSIP... "fibrotic". No lung bio so not sure where she gets it. She is a specialist in IPF tho' so she no doubt knows. NSIP to UIP???

uKKKK.

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

Re: Sher-NSIP

Just to add to this...there are 3 forns of NSIP...Cellular, Mixed & Fibrotic. Of these it's the Cellular that responds best to Steroid treatment.

Fibrotic NSIP is the one that has researchers still in a conundrum about with regard to it's relationship to UIP. The big question is why are they finding both types in the same lung at biospy. It is being speculated that Fibrotic NSIP becomes UIP at some point!

Where there is a discrepancy between HRCT result & Pathology from the VATS biopsy, then many researchers are saying that the overall diagnosis should be UIP not NSIP!

GIO

> > > >> > > > Sher,> > > > I'm happy to hear the doctors have switched your diagnosis. NSIP> > > is definitely preferable to IPF, the life expectancy is much longer> > > and as a bonus, it does not always progress. As a matter of fact,> > > Dr. on at Duke just told me last month that he's seen patients> > > with NSIP who have been "stable for decades." I mean I know that my> > > experience may be different but anything that gives us hope is> > > helpful!> > > > Have they switched your dx based on the behavior of the disease or> > > also on the ct scan results? NSIP is usually very identifiable by CT> > > scan. To identify the type of NSIP (fibrotic, cellular or mixed) you> > > would need a biopsy. But at this point it probably doesn't matter as> > > long as your stable. I understand why you wouldn't put yourself> > > through that. I don't regret my biopsy but I totally get why you've> > > chosen not to go down that road.> > > > In the meantime, celebrate stability!! Stable is my happy word!!> > > > Beth> > > > Age 48 Fibrotic NSIP 06/06> > > >> > > > Change everything. Love and Forgive> > > >> > >> >>

[Guest guest]

Sher,

Yes, my disease was already advanced when I was diagnosed in 06. I had already lost 60% of my lung function at diagnosis. The good news is thanks to the prednisone initially and God knows what since then I've remained stable. I've not lost any ground at all, use the same amounts of O2 that I used then and my activity and exercise tolerance is the same. If anything I feel better and am more active than I was the summer after I was diagnosed. I think I've just adjusted to my limitations and have figured out how to live with my 'new normal'.

I would agree with your doctor in maintaining oxygenation is critical for all of us. Forcing our bodies to struggle with sub-optimal O2 levels damages our bodies, causes PH, heart damage, liver damage etc etc etc ad nauseum!!!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Re: Sher-NSIP

, I read that you are confused about what type of IPF you have--IPF, NSIP, etc. plus honeycombing. I had the same issue. For about 4 years, mine was diagnosed NSIP. then I took my biopsy slides to a major ILD center (this year) and then I was diagnosed UIP(honeycombing) IPF. My doctor told me that there have been newer advances for the pathlogist in reading the biopsy slides. I am going to try and qualify for the STEP Trial in two weeks and the nurse mentioned to me that my biopsy slides would have to be looked at AGAIN for other characteristics that have been determined by the Trial. Whew! I know it is confusing. Maybe different parts of our lungs can have different kinds of pulmonary fibrosis! (This statement came from me!) Toodles! Jane UIP/IPF formerly NSIP 12/1998 Dalton, Georgia aka pianolady_musicgirl

> > >> > > Sher,> > > I'm happy to hear the doctors have switched your diagnosis. NSIP> > is definitely preferable to IPF, the life expectancy is much longer> > and as a bonus, it does not always progress. As a matter of fact,> > Dr. on at Duke just told me last month that he's seen patients> > with NSIP who have been "stable for decades." I mean I know that my> > experience may be different

but anything that gives us hope is> > helpful!> > > Have they switched your dx based on the behavior of the disease or> > also on the ct scan results? NSIP is usually very identifiable by CT> > scan. To identify the type of NSIP (fibrotic, cellular or mixed) you> > would need a biopsy. But at this point it probably doesn't matter as> > long as your stable. I understand why you wouldn't put yourself> > through that. I don't regret my biopsy but I totally get why you've> > chosen not to go down that road.> > > In the meantime, celebrate stability!! Stable is my happy word!!> > > Beth> > > Age 48 Fibrotic NSIP 06/06> > >> > > Change everything. Love and Forgive> > >> >>

CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi ____________ _________ _________ _________ _________ __

[Guest guest]

Sher,

Not to be nitpicky but IPF is an independant diagnosis. UIP and IPF are sometimes used interchangeably. I've never seen NSIP referred to as NSIP-IPF. NSIP is an independant diagnosis too. As is BOOP, and DIP and RB-ILD, and HP. Sometimes people will use IPF as a catch all term for any of these dx but that's not really accurate.

All of these alphabet soup diagnosis are forms of pulmonary fibrosis. IPF is a form of pulmonary fibrosis, UIP is a form of pulmonary fibrosis, HP is a form of pulmonary fibrosis etc etc.

Isn't this fun?????

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Re: Sher-NSIP

, I read that you are confused about what type of IPF you have--IPF, NSIP, etc. plus honeycombing. I had the same issue. For about 4 years, mine was diagnosed NSIP. then I took my biopsy slides to a major ILD center (this year) and then I was diagnosed UIP(honeycombing) IPF. My doctor told me that there have been newer advances for the pathlogist in reading the biopsy slides. I am going to try and qualify for the STEP Trial in two weeks and the nurse mentioned to me that my biopsy slides would have to be looked at AGAIN for other characteristics that have been determined by the Trial. Whew! I know it is confusing. Maybe different parts of our lungs can have different kinds of pulmonary fibrosis! (This statement came from me!) Toodles! Jane UIP/IPF formerly NSIP 12/1998 Dalton, Georgia aka pianolady_musicgirl

> > >> > > Sher,> > > I'm happy to hear the doctors have switched your diagnosis. NSIP> > is definitely preferable to IPF, the life expectancy is much longer> > and as a bonus, it does not always progress. As a matter of fact,> > Dr. on at Duke just told me last month that he's seen patients> > with NSIP who have been "stable for decades." I mean I know that my> > experience may be different but anything that gives us hope is> > helpful!> > > Have they switched your dx based on the behavior of the disease or> > also on the ct scan results? NSIP is usually very identifiable by CT> > scan. To identify the type of NSIP (fibrotic, cellular or mixed) you> > would need a biopsy. But at this point it probably doesn't matter

as> > long as your stable. I understand why you wouldn't put yourself> > through that. I don't regret my biopsy but I totally get why you've> > chosen not to go down that road.> > > In the meantime, celebrate stability!! Stable is my happy word!!> > > Beth> > > Age 48 Fibrotic NSIP 06/06> > >> > > Change everything. Love and Forgive> > >> >>

CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi ____________ _________ _________ _________ _________ __

[Guest guest]

OOOOOOHHHHHHH NNNNNOOOOOOOO, are you telling me I have two of these monsters.. LOL Oh wellthats just peachy.. lol  Love and Prayers, PeggyIPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up." Sher,Not to be nitpicky but IPF is an independant diagnosis. UIP and IPF are sometimes used interchangeably. I've never seen NSIP referred to as NSIP-IPF. NSIP is an independant diagnosis too. As is BOOP, and DIP and RB-ILD, and HP. Sometimes people will use IPF as a catch all term for any of these dx but that's not really accurate.All of these alphabet soup diagnosis are forms of pulmonary fibrosis. IPF is a form of pulmonary fibrosis, UIP is a form of pulmonary fibrosis, HP is a form of pulmonary fibrosis etc etc.Isn't this fun?????   Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive        Re: Sher-NSIP, I read that you are confused about what type of IPF you have--IPF, NSIP, etc. plus honeycombing.  I had the same issue.  For about 4 years, mine was diagnosed NSIP.  then I took my biopsy slides to a major ILD center (this year) and then I was diagnosed UIP(honeycombing) IPF.  My doctor told me that there have been newer advances for the pathlogist in reading the biopsy slides.  I am going to try and qualify for the STEP Trial in two weeks and the nurse mentioned to me that my biopsy slides would have to be looked at AGAIN for other characteristics that have been determined by the Trial.  Whew!  I know it is confusing.  Maybe different parts of our lungs can have different kinds of pulmonary fibrosis!  (This statement came from me!)  Toodles!  Jane UIP/IPF formerly NSIP 12/1998 Dalton, Georgia aka pianolady_musicgirl> > >> > > Sher,> > > I'm happy to hear the doctors have switched your diagnosis. NSIP> > is definitely preferable to IPF, the life expectancy is much longer> > and as a bonus, it does not always progress. As a matter of fact,> > Dr. on at Duke just told me last month that he's seen patients> > with NSIP who have been "stable for decades." I mean I know that my> > experience may be different but anything that gives us hope is> > helpful!> > > Have they switched your dx based on the behavior of the disease or> > also on the ct scan results? NSIP is usually very identifiable by CT> > scan. To identify the type of NSIP (fibrotic, cellular or mixed) you> > would need a biopsy. But at this point it probably doesn't matter as> > long as your stable. I understand why you wouldn't put yourself> > through that. I don't regret my biopsy but I totally get why you've> > chosen not to go down that road.> > > In the meantime, celebrate stability!! Stable is my happy word!!> > > Beth> > > Age 48 Fibrotic NSIP 06/06> > >> > > Change everything. Love and Forgive> > >> >>CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi____________ _________ _________ _________ _________ __

[Guest guest]

Peggy,

From reading the board, it doesn't seem all that unusual to have more than one form of fibrosis going on in our lungs. I don't really understand any of it and IT REALLY STINKS!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Re: Sher-NSIP

, I read that you are confused about what type of IPF you have--IPF, NSIP, etc. plus honeycombing. I had the same issue. For about 4 years, mine was diagnosed NSIP. then I took my biopsy slides to a major ILD center (this year) and then I was diagnosed UIP(honeycombing) IPF. My doctor told me that there have been newer advances for the pathlogist in reading the biopsy slides. I am going to try and qualify for the STEP Trial in two weeks and the nurse mentioned to me that my biopsy slides would have to be looked at AGAIN for other characteristics that have been determined by the Trial. Whew! I know it is confusing. Maybe different parts of our lungs can have different kinds of pulmonary fibrosis! (This statement came from me!) Toodles! Jane UIP/IPF formerly NSIP 12/1998 Dalton, Georgia aka pianolady_musicgirl

> > >> > > Sher,> > > I'm happy to hear the doctors have switched your diagnosis. NSIP> > is definitely preferable to IPF, the life expectancy is much longer> > and as a bonus, it does not always progress. As a matter of fact,> > Dr. on at Duke just told me last month that he's seen patients> > with NSIP who have been "stable for decades." I mean I know that my> > experience may be different but anything that gives us hope is> > helpful!> > > Have they switched your dx based on the behavior of the disease or> > also on the ct scan results? NSIP is usually very identifiable by CT> > scan. To identify the type of NSIP (fibrotic, cellular or mixed) you> > would need a biopsy. But at this point it probably doesn't matter

as> > long as your stable. I understand why you wouldn't put yourself> > through that. I don't regret my biopsy but I totally get why you've> > chosen not to go down that road.> > > In the meantime, celebrate stability!! Stable is my happy word!!> > > Beth> > > Age 48 Fibrotic NSIP 06/06> > >> > > Change everything. Love and Forgive> > >> >>

CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi

____________ _________ _________ _________ _________ __

[Guest guest]

Yeah, I thought it was kinda a double whammy!! They didn't find the UIP until I had the lung biopsy in January. They diagnosed the IPF with a chest CT. Sometimes now I wish I had not had the lung biopsy and then I wouldn't know, but then again, if I didn't, I would probably still be wondering. If I was older, I don't think I would have done the VATS, but I am only 47 and I had a little hope. Oh, well, I have to think God has a reason for this to happen whatever it may be and I am just going to deal with it. Would it be a bad time to say DAMNIT!!??? Caro Sher Bauman wrote: Caro... I just noticed your name at the bottom of your post about my picture....thanks. That's my Rosebud. I see you were Dx IPf in '07 and then UIP in '08. That's a double whammy isn't it? I wonder why you were given 2 Dxs of pretty much the same thing, as MB says? Hey, one "thing" is enough isn't it! I'm going to have to stop fretting about "when" to use O2...SATS up or down.... I drive myself up the wall. The way it is is

the way it is. So if I feel the need for O2, I'll use it, regardless. I hope you have a nice weekend. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Re: Sher-NSIP , I read that

you are confused about what type of IPF you have--IPF, NSIP, etc. plus honeycombing. I had the same issue. For about 4 years, mine was diagnosed NSIP. then I took my biopsy slides to a major ILD center (this year) and then I was diagnosed UIP(honeycombing) IPF. My doctor told me that there have been newer advances for the pathlogist in reading the biopsy slides. I am going to try and qualify for the STEP Trial in two weeks and the nurse mentioned to me that my biopsy slides would have to be looked at AGAIN for other characteristics that have been determined by the Trial. Whew! I know it is confusing. Maybe different parts of our lungs can have different kinds of pulmonary fibrosis! (This statement came from me!) Toodles! Jane UIP/IPF formerly NSIP 12/1998 Dalton, Georgia aka pianolady_musicgirl > > >> > > Sher,> > > I'm happy to hear the doctors have switched your diagnosis. NSIP> > is definitely preferable to IPF, the life expectancy is much longer> > and as a bonus, it does not always progress. As a matter of fact,> > Dr. on at Duke just told me last month that he's seen patients> > with NSIP who have been "stable for decades." I mean I know that my> > experience may be different but anything that gives us hope is> > helpful!> > > Have they switched your dx based on the behavior of the disease or> > also on

the ct scan results? NSIP is usually very identifiable by CT> > scan. To identify the type of NSIP (fibrotic, cellular or mixed) you> > would need a biopsy. But at this point it probably doesn't matter as> > long as your stable. I understand why you wouldn't put yourself> > through that. I don't regret my biopsy but I totally get why you've> > chosen not to go down that road.> > > In the meantime, celebrate stability!! Stable is my happy word!!> > > Beth> > > Age 48 Fibrotic NSIP 06/06> > >> > > Change everything. Love and Forgive> > >> >> CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi __________________________________________________

[Guest guest]

Yeah, I thought it was kinda a double whammy!! They didn't find the UIP until I had the lung biopsy in January. They diagnosed the IPF with a chest CT. Sometimes now I wish I had not had the lung biopsy and then I wouldn't know, but then again, if I didn't, I would probably still be wondering. If I was older, I don't think I would have done the VATS, but I am only 47 and I had a little hope. Oh, well, I have to think God has a reason for this to happen whatever it may be and I am just going to deal with it. Would it be a bad time to say DAMNIT!!??? Caro Sher Bauman wrote: Caro... I just noticed your name at the bottom of your post about my picture....thanks. That's my Rosebud. I see you were Dx IPf in '07 and then UIP in '08. That's a double whammy isn't it? I wonder why you were given 2 Dxs of pretty much the same thing, as MB says? Hey, one "thing" is enough isn't it! I'm going to have to stop fretting about "when" to use O2...SATS up or down.... I drive myself up the wall. The way it is is

the way it is. So if I feel the need for O2, I'll use it, regardless. I hope you have a nice weekend. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Re: Sher-NSIP , I read that

you are confused about what type of IPF you have--IPF, NSIP, etc. plus honeycombing. I had the same issue. For about 4 years, mine was diagnosed NSIP. then I took my biopsy slides to a major ILD center (this year) and then I was diagnosed UIP(honeycombing) IPF. My doctor told me that there have been newer advances for the pathlogist in reading the biopsy slides. I am going to try and qualify for the STEP Trial in two weeks and the nurse mentioned to me that my biopsy slides would have to be looked at AGAIN for other characteristics that have been determined by the Trial. Whew! I know it is confusing. Maybe different parts of our lungs can have different kinds of pulmonary fibrosis! (This statement came from me!) Toodles! Jane UIP/IPF formerly NSIP 12/1998 Dalton, Georgia aka pianolady_musicgirl > > >> > > Sher,> > > I'm happy to hear the doctors have switched your diagnosis. NSIP> > is definitely preferable to IPF, the life expectancy is much longer> > and as a bonus, it does not always progress. As a matter of fact,> > Dr. on at Duke just told me last month that he's seen patients> > with NSIP who have been "stable for decades." I mean I know that my> > experience may be different but anything that gives us hope is> > helpful!> > > Have they switched your dx based on the behavior of the disease or> > also on

the ct scan results? NSIP is usually very identifiable by CT> > scan. To identify the type of NSIP (fibrotic, cellular or mixed) you> > would need a biopsy. But at this point it probably doesn't matter as> > long as your stable. I understand why you wouldn't put yourself> > through that. I don't regret my biopsy but I totally get why you've> > chosen not to go down that road.> > > In the meantime, celebrate stability!! Stable is my happy word!!> > > Beth> > > Age 48 Fibrotic NSIP 06/06> > >> > > Change everything. Love and Forgive> > >> >> CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi __________________________________________________

[Guest guest]

IPF stands for Idiopathic Pulmonary Fibrosis as opposed to Pulmonary Fibrosis (PF)...Idiopathic means UNKNOWN CAUSE....Joyce, Zena & others have PF secondary to their Auto-immune or Connective Tissue Diseases & therefore the CAUSE of their Fibrosis is KNOWN. Some people get PF as a result of Cancer treaments from eitherthe drugs used OR the radiation. Some people have the genetic version of PF & so on...their cause is KNOWN!

If you think of the term IPF as an UMBRELLA term then all sorts of TYPES of PF patterns shelter under that umbrella....UIP, NSIP in all of its variations, HPF (Hypersensitivity PF), DIP etc etc etc

Now it's also true that many specialists in America uses IPF & UIP interchangeably. This confusion in terms does not exist in Australia.

We ALL have Pulmonary Fibrosis, some of us know why & many of us don't....hence IPF & PF!

The TYPE we have gives some pointers ot possible prognosis & treatment plans BUT it can be VERY hard to be totally accurate about which type we DO have. Unless your HRCT can AND your pathology sample ( from 3 diffeernt lung sites) VATS results are ALL in concurrence!

Hope this is a bit clearer than MUD!!!!!!

in Oz

IPF: Fibrotic NSIP/ UIP??????

May 2007

Reynauds'

> > > >> > > > Sher,> > > > I'm happy to hear the doctors have switched your diagnosis. NSIP> > > is definitely preferable to IPF, the life expectancy is much longer> > > and as a bonus, it does not always progress. As a matter of fact,> > > Dr. on at Duke just told me last month that he's seen > patients> > > with NSIP who have been "stable for decades." I mean I know that my> > > experience may be different but anything that gives us hope is> > > helpful!> > > > Have they switched your dx based on the behavior of the > disease or> > > also on the ct scan results? NSIP is usually very identifiable > by CT> > > scan. To identify the type of NSIP (fibrotic, cellular or mixed) > you> > > would need a biopsy. But at this point it probably doesn't > matter as> > > long as your stable. I understand why you wouldn't put yourself> > > through that. I don't regret my biopsy but I totally get why you've> > > chosen not to go down that road.> > > > In the meantime, celebrate stability!! Stable is my happy word!!> > > > Beth> > > > Age 48 Fibrotic NSIP 06/06> > > >> > > > Change everything. Love and Forgive> > > >> > >> >> > > > > Caro> ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, > RHEUMATOID ARTHRITIS 03/08> Mississippi> __________________________________________________>

[Guest guest]

Beth,

Love love love the speed bump analogy-still laughing!

Sarcoid/PF 3/2006 California

Re: Sher-NSIP

, I read that you are confused about what type of IPF you have--IPF, NSIP, etc. plus honeycombing. I had the same issue. For about 4 years, mine was diagnosed NSIP. then I took my biopsy slides to a major ILD center (this year) and then I was diagnosed UIP(honeycombing) IPF. My doctor told me that there have been newer advances for the pathlogist in reading the biopsy slides. I am going to try and qualify for the STEP Trial in two weeks and the nurse mentioned to me that my biopsy slides would have to be looked at AGAIN for other characteristics that have been determined by the Trial. Whew! I know it is confusing. Maybe different parts of our lungs can have different kinds of pulmonary fibrosis! (This statement came from me!) Toodles! Jane UIP/IPF formerly NSIP 12/1998 Dalton, Georgia aka pianolady_musicgirl

> > >> > > Sher,> > > I'm happy to hear the doctors have switched your diagnosis. NSIP> > is definitely preferable to IPF, the life expectancy is much longer> > and as a bonus, it does not always progress. As a matter of fact,> > Dr. on at Duke just told me last month that he's seen patients> > with NSIP who have been "stable for decades." I mean I know that my> > experience may be different

but anything that gives us hope is> > helpful!> > > Have they switched your dx based on the behavior of the disease or> > also on the ct scan results? NSIP is usually very identifiable by CT> > scan. To identify the type of NSIP (fibrotic, cellular or mixed) you> > would need a biopsy. But at this point it probably doesn't matter as> > long as your stable. I understand why you wouldn't put yourself> > through that. I don't regret my biopsy but I totally get why you've> > chosen not to go down that road.> > > In the meantime, celebrate stability!! Stable is my happy word!!> > > Beth> > > Age 48 Fibrotic NSIP 06/06> > >> > > Change everything. Love and Forgive> > >> >>

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[Guest guest]

Caro...oh it's a good time to say DAMNIT!

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

Re: Sher-NSIP

, I read that you are confused about what type of IPF you have--IPF, NSIP, etc. plus honeycombing. I had the same issue. For about 4 years, mine was diagnosed NSIP. then I took my biopsy slides to a major ILD center (this year) and then I was diagnosed UIP(honeycombing) IPF. My doctor told me that there have been newer advances for the pathlogist in reading the biopsy slides. I am going to try and qualify for the STEP Trial in two weeks and the nurse mentioned to me that my biopsy slides would have to be looked at AGAIN for other characteristics that have been determined by the Trial. Whew! I know it is confusing. Maybe different parts of our lungs can have different kinds of pulmonary fibrosis! (This statement came from me!) Toodles! Jane UIP/IPF formerly NSIP 12/1998 Dalton, Georgia aka pianolady_musicgirl

> > >> > > Sher,> > > I'm happy to hear the doctors have switched your diagnosis. NSIP> > is definitely preferable to IPF, the life expectancy is much longer> > and as a bonus, it does not always progress. As a matter of fact,> > Dr. on at Duke just told me last month that he's seen patients> > with NSIP who have been "stable for decades." I mean I know that my> > experience may be different but anything that gives us hope is> > helpful!> > > Have they switched your dx based on the behavior of the disease or> > also on the ct scan results? NSIP is usually very identifiable by CT> > scan. To identify the type of NSIP (fibrotic, cellular or mixed) you> > would need a biopsy. But at this point it probably doesn't matter as> > long as your stable. I understand why you wouldn't put yourself> > through that. I don't regret my biopsy but I totally get why you've> > chosen not to go down that road.> > > In the meantime, celebrate stability!! Stable is my happy word!!> > > Beth> > > Age 48 Fibrotic NSIP 06/06> > >> > > Change everything. Love and Forgive> > >> >>

CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi __________________________________________________

[Guest guest]

I did a good thing then, cuz that's exactly what I said!! CaroSher Bauman wrote: Caro...oh it's a good time to say DAMNIT! Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Re: Sher-NSIP , I read that you are confused about what type of IPF you have--IPF, NSIP, etc. plus honeycombing. I had the same issue. For about 4 years, mine was diagnosed NSIP. then I took my biopsy slides to a major ILD center (this year) and then I was diagnosed UIP(honeycombing) IPF. My doctor told me that there have been newer advances for the pathlogist in reading the biopsy slides. I am going to try and qualify for the STEP Trial in two weeks and the nurse mentioned to me that my biopsy slides would have to be looked at AGAIN for other characteristics that have been determined by the Trial. Whew! I know

it is confusing. Maybe different parts of our lungs can have different kinds of pulmonary fibrosis! (This statement came from me!) Toodles! Jane UIP/IPF formerly NSIP 12/1998 Dalton, Georgia aka pianolady_musicgirl > > >> > > Sher,> > > I'm happy to hear the doctors have switched your diagnosis. NSIP> > is definitely preferable to IPF, the life expectancy is much longer> > and as a bonus, it does not always progress. As a matter of fact,> > Dr.

on at Duke just told me last month that he's seen patients> > with NSIP who have been "stable for decades." I mean I know that my> > experience may be different but anything that gives us hope is> > helpful!> > > Have they switched your dx based on the behavior of the disease or> > also on the ct scan results? NSIP is usually very identifiable by CT> > scan. To identify the type of NSIP (fibrotic, cellular or mixed) you> > would need a biopsy. But at this point it probably doesn't matter as> > long as your stable. I understand why you wouldn't put yourself> > through that. I don't regret my biopsy but I totally get why you've> > chosen not to go down that road.> > > In the meantime, celebrate stability!! Stable is my happy word!!> > > Beth> > > Age 48 Fibrotic NSIP 06/06> > >> > > Change

everything. Love and Forgive> > >> >> CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi __________________________________________________

[Guest guest]

Caro....if you have to use it often, go ahead! Be my guest.

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

Re: Sher-NSIP

, I read that you are confused about what type of IPF you have--IPF, NSIP, etc. plus honeycombing. I had the same issue. For about 4 years, mine was diagnosed NSIP. then I took my biopsy slides to a major ILD center (this year) and then I was diagnosed UIP(honeycombing) IPF. My doctor told me that there have been newer advances for the pathlogist in reading the biopsy slides. I am going to try and qualify for the STEP Trial in two weeks and the nurse mentioned to me that my biopsy slides would have to be looked at AGAIN for other characteristics that have been determined by the Trial. Whew! I know it is confusing. Maybe different parts of our lungs can have different kinds of pulmonary fibrosis! (This statement came from me!) Toodles! Jane UIP/IPF formerly NSIP 12/1998 Dalton, Georgia aka pianolady_musicgirl

> > >> > > Sher,> > > I'm happy to hear the doctors have switched your diagnosis. NSIP> > is definitely preferable to IPF, the life expectancy is much longer> > and as a bonus, it does not always progress. As a matter of fact,> > Dr. on at Duke just told me last month that he's seen patients> > with NSIP who have been "stable for decades." I mean I know that my> > experience may be different but anything that gives us hope is> > helpful!> > > Have they switched your dx based on the behavior of the disease or> > also on the ct scan results? NSIP is usually very identifiable by CT> > scan. To identify the type of NSIP (fibrotic, cellular or mixed) you> > would need a biopsy. But at this point it probably doesn't matter as> > long as your stable. I understand why you wouldn't put yourself> > through that. I don't regret my biopsy but I totally get why you've> > chosen not to go down that road.> > > In the meantime, celebrate stability!! Stable is my happy word!!> > > Beth> > > Age 48 Fibrotic NSIP 06/06> > >> > > Change everything. Love and Forgive> > >> >>

CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi __________________________________________________

[Guest guest]

! Ok I liked your description of the different kinds but I still wonder if the treatment is all that different for each one of the different kinds. Does that make sense? It just seems that no matter what kind you have, the docs are scrambling to determine the best way to treat. Am I even in the ball park? K Illinois wrote: IPF stands for Idiopathic Pulmonary Fibrosis as opposed to Pulmonary Fibrosis

(PF)...Idiopathic means UNKNOWN CAUSE....Joyce, Zena & others have PF secondary to their Auto-immune or Connective Tissue Diseases & therefore the CAUSE of their Fibrosis is KNOWN. Some people get PF as a result of Cancer treaments from eitherthe drugs used OR the radiation. Some people have the genetic version of PF & so on...their cause is KNOWN! If you think of the term IPF as an UMBRELLA term then all sorts of TYPES of PF patterns shelter under that umbrella....UIP, NSIP in all of its variations, HPF (Hypersensitivity PF), DIP etc etc etc Now it's also true that many specialists in America uses IPF & UIP interchangeably. This confusion in terms does not exist in Australia. We ALL have Pulmonary Fibrosis, some of us know why & many of us don't....hence IPF & PF! The TYPE we have

gives some pointers ot possible prognosis & treatment plans BUT it can be VERY hard to be totally accurate about which type we DO have. Unless your HRCT can AND your pathology sample ( from 3 diffeernt lung sites) VATS results are ALL in concurrence! Hope this is a bit clearer than MUD!!!!!! in Oz IPF: Fibrotic NSIP/ UIP?????? May 2007 Reynauds' > > >

>> > > > Sher,> > > > I'm happy to hear the doctors have switched your diagnosis. NSIP> > > is definitely preferable to IPF, the life expectancy is much longer> > > and as a bonus, it does not always progress. As a matter of fact,> > > Dr. on at Duke just told me last month that he's seen > patients> > > with NSIP who have been "stable for decades." I mean I know that my> > > experience may be different but anything that gives us hope is> > > helpful!> > > > Have they switched your dx based on the behavior of the > disease or> > > also on the ct scan results? NSIP is usually very identifiable > by CT> > > scan. To identify the type of NSIP (fibrotic, cellular or mixed) > you> > > would need a biopsy. But at this point it probably doesn't > matter as> > >

long as your stable. I understand why you wouldn't put yourself> > > through that. I don't regret my biopsy but I totally get why you've> > > chosen not to go down that road.> > > > In the meantime, celebrate stability!! Stable is my happy word!!> > > > Beth> > > > Age 48 Fibrotic NSIP 06/06> > > >> > > > Change everything. Love and Forgive> > > >> > >> >> > > > > Caro> ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, > RHEUMATOID ARTHRITIS 03/08> Mississippi> __________________________________________________>

[Guest guest]

,

If Don is already on Immuran and prednisone, (he is right?) then he's getting the drugs that most any doc would use to try and treat any type of pulmonary fibrosis. (Cellcept is also used, usually in place of Immuran if the Immuran isn't well tolerated) I had a biopsy and I'm glad I did. If I had it to do over again, I would but that's me.

There is considerable risk attached to any type of invasive lung surgery when someones lungs are as compromised as ours are. If his doctor suggests it, I'd ask lots of questions...what is the risk? what do they hope to find out? how will treatment differ after I have it?

In the book that you mentioned, 'Never tell them you're dying', the couple come to regret the biopsy at least at certain points because he never recovered to pre-biopsy function after the surgery.

It's definitely a risk and one you shouldn't take lightly. The risk of general anesthesia alone is considerable when someone has lung disease.

If they start to push it, ask a ton of questions and be completely satisfied with the answers before agreeing.

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Re: Re: Sher-NSIP

! Ok I liked your description of the different kinds but I still wonder if the treatment is all that different for each one of the different kinds. Does that make sense? It just seems that no matter what kind you have, the docs are scrambling to determine the best way to treat. Am I even in the ball park?

K

Illinois <gina.francis@ bigpond.com> wrote:

IPF stands for Idiopathic Pulmonary Fibrosis as opposed to Pulmonary Fibrosis (PF)...Idiopathic means UNKNOWN CAUSE....Joyce, Zena & others have PF secondary to their Auto-immune or Connective Tissue Diseases & therefore the CAUSE of their Fibrosis is KNOWN. Some people get PF as a result of Cancer treaments from eitherthe drugs used OR the radiation. Some people have the genetic version of PF & so on...their cause is KNOWN!

If you think of the term IPF as an UMBRELLA term then all sorts of TYPES of PF patterns shelter under that umbrella.... UIP, NSIP in all of its variations, HPF (Hypersensitivity PF), DIP etc etc etc

Now it's also true that many specialists in America uses IPF & UIP interchangeably. This confusion in terms does not exist in Australia.

We ALL have Pulmonary Fibrosis, some of us know why & many of us don't....hence IPF & PF!

The TYPE we have gives some pointers ot possible prognosis & treatment plans BUT it can be VERY hard to be totally accurate about which type we DO have. Unless your HRCT can AND your pathology sample ( from 3 diffeernt lung sites) VATS results are ALL in concurrence!

Hope this is a bit clearer than MUD!!!!!!

in Oz

IPF: Fibrotic NSIP/ UIP??????

May 2007

Reynauds'

> > > >> > > > Sher,> > > > I'm happy to hear the doctors have switched your diagnosis. NSIP> > > is definitely preferable to IPF, the life expectancy is much longer> > > and as a bonus, it does not always progress. As a matter of fact,> > > Dr. on at Duke just told me last month that he's seen > patients> > > with NSIP who have been "stable for decades." I mean I know that my> > > experience may be different but

anything that gives us hope is> > > helpful!> > > > Have they switched your dx based on the behavior of the > disease or> > > also on the ct scan results? NSIP is usually very identifiable > by CT> > > scan. To identify the type of NSIP (fibrotic, cellular or mixed) > you> > > would need a biopsy. But at this point it probably doesn't > matter as> > > long as your stable. I understand why you wouldn't put yourself> > > through that. I don't regret my biopsy but I totally get why you've> > > chosen not to go down that road.> > > > In the meantime, celebrate stability!! Stable is my happy word!!> > > > Beth> > > > Age 48 Fibrotic NSIP 06/06> > > >> > > > Change everything. Love and Forgive> > > >> > >>

>> > > > > Caro> ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, > RHEUMATOID ARTHRITIS 03/08> Mississippi> ____________ _________ _________ _________ _________ __>

[Guest guest]

Thanks girl, I knew I could count on some quality answers to my musings? Yes he is on Immuran, but is really beginning to question the prednisone. He didn't feel as bad before the pred and now that they have discovered the problem with the cough (primarily gurd) he questions if the prednisone is necessary. His fibrosis didn't progress the first year of diagnosis. I'm scared not to take it and I know what many think on the board, but if quality of life is affected........ It scares me that the prednisone -----might-----stop the growth. Can we risk stopping the use of it. Our boys are really putting questions in our minds. Hummm! K Central Il Beth wrote: , If Don is already on Immuran and prednisone, (he is right?) then he's getting the drugs that most any doc would use to try and treat any type of pulmonary fibrosis. (Cellcept is also used, usually in place of Immuran if the Immuran isn't well tolerated) I had a biopsy and I'm glad I did. If I had it to do over again, I would but that's me. There is considerable risk attached to any type of invasive lung surgery when someones lungs are as compromised as ours are. If his doctor suggests it, I'd ask lots of questions...what is

the risk? what do they hope to find out? how will treatment differ after I have it? In the book that you mentioned, 'Never tell them you're dying', the couple come to regret the biopsy at least at certain points because he never recovered to pre-biopsy function after the surgery. It's definitely a risk and one you shouldn't take lightly. The risk of general anesthesia alone is considerable when someone has lung disease. If they start to push it, ask a ton of questions and be completely satisfied with the answers before agreeing. Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Re: Re: Sher-NSIP ! Ok I liked your description of the different kinds but I still wonder if the treatment is all that different for each one of the different kinds. Does that make sense? It just seems that no matter what kind you have, the docs are scrambling to determine the best way to treat. Am I even in the ball park? K Illinois <gina.francis@ bigpond.com> wrote: IPF stands for Idiopathic Pulmonary Fibrosis as opposed to Pulmonary Fibrosis (PF)...Idiopathic means UNKNOWN CAUSE....Joyce, Zena & others have

PF secondary to their Auto-immune or Connective Tissue Diseases & therefore the CAUSE of their Fibrosis is KNOWN. Some people get PF as a result of Cancer treaments from eitherthe drugs used OR the radiation. Some people have the genetic version of PF & so on...their cause is KNOWN! If you think of the term IPF as an UMBRELLA term then all sorts of TYPES of PF patterns shelter under that umbrella.... UIP, NSIP in all of its variations, HPF (Hypersensitivity PF), DIP etc etc etc Now it's also true that many specialists in America uses IPF & UIP interchangeably. This confusion in terms does not exist in Australia. We ALL have Pulmonary Fibrosis, some of us know why & many of us don't....hence IPF & PF! The TYPE we have gives some pointers ot possible prognosis & treatment plans BUT it can

be VERY hard to be totally accurate about which type we DO have. Unless your HRCT can AND your pathology sample ( from 3 diffeernt lung sites) VATS results are ALL in concurrence! Hope this is a bit clearer than MUD!!!!!! in Oz IPF: Fibrotic NSIP/ UIP?????? May 2007 Reynauds' > > > >> > > > Sher,> > > > I'm happy to hear the doctors have switched your diagnosis.

NSIP> > > is definitely preferable to IPF, the life expectancy is much longer> > > and as a bonus, it does not always progress. As a matter of fact,> > > Dr. on at Duke just told me last month that he's seen > patients> > > with NSIP who have been "stable for decades." I mean I know that my> > > experience may be different but anything that gives us hope is> > > helpful!> > > > Have they switched your dx based on the behavior of the > disease or> > > also on the ct scan results? NSIP is usually very identifiable > by CT> > > scan. To identify the type of NSIP (fibrotic, cellular or mixed) > you> > > would need a biopsy. But at this point it probably doesn't > matter as> > > long as your stable. I understand why you wouldn't put yourself> > > through that. I don't regret my

biopsy but I totally get why you've> > > chosen not to go down that road.> > > > In the meantime, celebrate stability!! Stable is my happy word!!> > > > Beth> > > > Age 48 Fibrotic NSIP 06/06> > > >> > > > Change everything. Love and Forgive> > > >> > >> >> > > > > Caro> ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, > RHEUMATOID ARTHRITIS 03/08> Mississippi> ____________ _________ _________ _________ _________ __>

[Guest guest]

Depends on who you believe or don't believe. Some treat all forms with

prednisone. Some doubt prednisone helping any forms. Most believe

prednisone can help all forms sometimes except believe it doesn't help

UIP. Reality, who knows. Now, you take Sher as an example. She isn't

going to take prednisone regardless. She is doing relatively well. She's

on a fairly low level of oxygen. So, she's decided rightfully for her

there is no reason to have a VATS. I decided to have one. And, we both

made good choices...the right ones for ourselves.

> > > > >

> > > > > Sher,

> > > > > I'm happy to hear the doctors have switched your diagnosis.

NSIP

> > > > is definitely preferable to IPF, the life expectancy is much

longer

> > > > and as a bonus, it does not always progress. As a matter of

fact,

> > > > Dr. on at Duke just told me last month that he's seen

> > patients

> > > > with NSIP who have been " stable for decades. " I mean I know that

my

> > > > experience may be different but anything that gives us hope is

> > > > helpful!

> > > > > Have they switched your dx based on the behavior of the

> > disease or

> > > > also on the ct scan results? NSIP is usually very identifiable

> > by CT

> > > > scan. To identify the type of NSIP (fibrotic, cellular or mixed)

> > you

> > > > would need a biopsy. But at this point it probably doesn't

> > matter as

> > > > long as your stable. I understand why you wouldn't put yourself

> > > > through that. I don't regret my biopsy but I totally get why

you've

> > > > chosen not to go down that road.

> > > > > In the meantime, celebrate stability!! Stable is my happy

word!!

> > > > > Beth

> > > > > Age 48 Fibrotic NSIP 06/06

> > > > >

> > > > > Change everything. Love and Forgive

> > > > >

> > > >

> > >

> >

> >

> >

> >

> > Caro

> > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08,

> > RHEUMATOID ARTHRITIS 03/08

> > Mississippi

> > __________________________________________________

> >

[Guest guest]

K....I'm one who refused to go for a lung bio. The surgery is tough, recovery is tough, pain can last even into a couple of years, infections are common..etc. Even if I know for sure what strain I have, there is no treatment and no cure. Not yet. So why do it is what I said to myself. Bruce had one and many more here. Some would do it again, some would not.

As MB says...gather lots of information and ask lots of questions. I think the main thing is...what does DON want to do, and what does he hope to gain from a bio if he wants one?

Don will know what to do when he has all the info........

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

Re: Re: Sher-NSIP

! Ok I liked your description of the different kinds but I still wonder if the treatment is all that different for each one of the different kinds. Does that make sense? It just seems that no matter what kind you have, the docs are scrambling to determine the best way to treat. Am I even in the ball park?

K

Illinois <gina.francis@ bigpond.com> wrote:

IPF stands for Idiopathic Pulmonary Fibrosis as opposed to Pulmonary Fibrosis (PF)...Idiopathic means UNKNOWN CAUSE....Joyce, Zena & others have PF secondary to their Auto-immune or Connective Tissue Diseases & therefore the CAUSE of their Fibrosis is KNOWN. Some people get PF as a result of Cancer treaments from eitherthe drugs used OR the radiation. Some people have the genetic version of PF & so on...their cause is KNOWN!

If you think of the term IPF as an UMBRELLA term then all sorts of TYPES of PF patterns shelter under that umbrella.... UIP, NSIP in all of its variations, HPF (Hypersensitivity PF), DIP etc etc etc

Now it's also true that many specialists in America uses IPF & UIP interchangeably. This confusion in terms does not exist in Australia.

We ALL have Pulmonary Fibrosis, some of us know why & many of us don't....hence IPF & PF!

The TYPE we have gives some pointers ot possible prognosis & treatment plans BUT it can be VERY hard to be totally accurate about which type we DO have. Unless your HRCT can AND your pathology sample ( from 3 diffeernt lung sites) VATS results are ALL in concurrence!

Hope this is a bit clearer than MUD!!!!!!

in Oz

IPF: Fibrotic NSIP/ UIP??????

May 2007

Reynauds'

> > > >> > > > Sher,> > > > I'm happy to hear the doctors have switched your diagnosis. NSIP> > > is definitely preferable to IPF, the life expectancy is much longer> > > and as a bonus, it does not always progress. As a matter of fact,> > > Dr. on at Duke just told me last month that he's seen > patients> > > with NSIP who have been "stable for decades." I mean I know that my> > > experience may be different but anything that gives us hope is> > > helpful!> > > > Have they switched your dx based on the behavior of the > disease or> > > also on the ct scan results? NSIP is usually very identifiable > by CT> > > scan. To identify the type of NSIP (fibrotic, cellular or mixed) > you> > > would need a biopsy. But at this point it probably doesn't > matter as> > > long as your stable. I understand why you wouldn't put yourself> > > through that. I don't regret my biopsy but I totally get why you've> > > chosen not to go down that road.> > > > In the meantime, celebrate stability!! Stable is my happy word!!> > > > Beth> > > > Age 48 Fibrotic NSIP 06/06> > > >> > > > Change everything. Love and Forgive> > > >> > >> >> > > > > Caro> ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, > RHEUMATOID ARTHRITIS 03/08> Mississippi> ____________ _________ _________ _________ _________ __>

[Guest guest]

This is one he really has to decide and then needs you to all support

his decision whatever it is. Only he can decide the value of possibly

living longer versus the value of quality of life. He needs to know that

its ok, however he chooses-that if he chooses length you won't bemoan

the side effects and the impact of them and if he chooses quality you

won't in any way think of it as him valuing time with you less. It's a

decision to be made with much consideration and based on some time, not

based on a moment or a day's feeling. But, none of us can ever truly

know how someone else is feeling. We come closer to understanding each

other on this forum than most anywhere, but, still, we can't know the

impact on another, their outlooks, their pain, physically and

emotionally. He can't possibly understand how this is all making you

feel and you can't put yourself in his place as much as you try.

> > > > >

> > > > > Sher,

> > > > > I'm happy to hear the doctors have switched your diagnosis.

NSIP

> > > > is definitely preferable to IPF, the life expectancy is much

longer

> > > > and as a bonus, it does not always progress. As a matter of

fact,

> > > > Dr. on at Duke just told me last month that he's seen

> > patients

> > > > with NSIP who have been " stable for decades. " I mean I know that

my

> > > > experience may be different but anything that gives us hope is

> > > > helpful!

> > > > > Have they switched your dx based on the behavior of the

> > disease or

> > > > also on the ct scan results? NSIP is usually very identifiable

> > by CT

> > > > scan. To identify the type of NSIP (fibrotic, cellular or mixed)

> > you

> > > > would need a biopsy. But at this point it probably doesn't

> > matter as

> > > > long as your stable. I understand why you wouldn't put yourself

> > > > through that. I don't regret my biopsy but I totally get why

you've

> > > > chosen not to go down that road.

> > > > > In the meantime, celebrate stability!! Stable is my happy

word!!

> > > > > Beth

> > > > > Age 48 Fibrotic NSIP 06/06

> > > > >

> > > > > Change everything. Love and Forgive

> > > > >

> > > >

> > >

> >

> >

> >

> >

> > Caro

> > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08,

> > RHEUMATOID ARTHRITIS 03/08

> > Mississippi

> > ____________ _________ _________ _________ _________ __

> >

[Guest guest]

Dear K,

From all the reading I've done I'd say that's pretty much it for the time being ......treatments that are known to be effective ACROSS the RANGE of PF conditions just do NOT exist.

However & it IS a big HOWEVER..... SOME patients DO respond to certain therapies such as Prednisone./ Imuran etc..some for a short period, some seem to respond all the time.

FOR EXAMPLE it's known that CELLULAR NSIP is a 'GOOD' responder...Mixed NSIP & Fibrotic NSIP are less certain, but there has been success for people with this form as well. Z & Beth are 2 people on this Forum who've had good response to Prednisone in terms of it stabilizing their PF.

People with UNDERLYING conditions such as Connective Tissue Disorders or Auto-Immune Disease aslo take Prednisone to control those disease processes. In those cases it is obviously beneficial to control the underlying casue of the diease process that lead to PF in the first place.

Although, in my mind, it DOES beg the question : WHY do Patients who've been taking Prednisone for years to control those diseases go on to develop PF at all if Prednisone is so darn good a drug for PF ????????

UIP is the one where the success is known to be poor unless there is a lot of inflamation & the Prednisone can at least reduce that aspect of the disease...it DOES NOT & CAN NOT reduce the scarring (Fibrosis). Doctors often prescribe it anyway for a variety of reasons (including merely wanting to something, ANYTHING to give their patients hope!)

Even if Don had a form that can respond in some way to Steroid/Autoimmune Treatments the downside can be that the side effects become too severe to continue. No one knows until they start the course of treatments. Some side effects can take a long time to show up. Some side effects stop (eg Diabetes, shakiness, weight gain) when the treatment stops..others become permanent! (eg Cataract, glaucoma, osteoporosis damage)

The 2 Drugs that do seem to be of universal benefit are O2 & NAC ( N- Acetyl Cysteine...given to relieve mucous production but now also thought to be operating at a cellular level to slow progression within lung tissue structures) There is now a Trial to go ahead to test the egffectives of NAC.

O2 use helps prevent damage to other major organs in the body & therefore helps to prolong life. as well as to ENJOY it more. I think it is critical that new patients are taught to understand just why O2 is so important. Doctors need to recognise that the 6 min walk is NOT a satisfactory indicator of O2 needs when taking exercise. I don't think it is good enough that Doctors wait to prescribe O2 until a patient is OBVIOUSLY displaying signs of Oxygn deprivation (blue lips, clubbing of the fingers, cold extremities, & dropping SATs in the 6 min Walk Test etc etc )

Now that many of us are being diagnosed in earlier stages of the Disease Process it is CRITICAL that we monitor ourselves for signs of dropping SATS when we ARE being active...not just sitting in a Doctor's Office, after an hour's waiting time (Sitting of course!) I don't WANT to just WALK thank you...I want to be out there LIVING....

Having a Lung Biopsy would hopefully indicate which TYPE of PF that Don has, but a word of warning...it needs to be done by one of the Facilities that specialise in PF....they need to take samples from 3 sites to cross examine what's going on in the lung. Other wise the Biopsy can be a waste of effort, especially given that it IS an invasive procedure with varying recovery times.

If Don was wanting to join any of the Clinical Trials he would have to have a Biopsy to be eligible.

WE've all had different experiences....try outting VATS in the Search facility on the Web Message Board you'll get lots of discussion that has gone on previously on this subject...as well as Prednisone...there's OODLES on that subject!

in Oz

IPF: Fibrotic NSIP/ UIP???????

Reynauds'

May 2007

> > > > >> > > > > Sher,> > > > > I'm happy to hear the doctors have switched your diagnosis. NSIP> > > > is definitely preferable to IPF, the life expectancy is much longer> > > > and as a bonus, it does not always progress. As a matter of fact,> > > > Dr. on at Duke just told me last month that he's seen > > patients> > > > with NSIP who have been "stable for decades." I mean I know that my> > > > experience may be different but anything that gives us hope is> > > > helpful!> > > > > Have they switched your dx based on the behavior of the > > disease or> > > > also on the ct scan results? NSIP is usually very identifiable > > by CT> > > > scan. To identify the type of NSIP (fibrotic, cellular or mixed) > > you> > > > would need a biopsy. But at this point it probably doesn't > > matter as> > > > long as your stable. I understand why you wouldn't put yourself> > > > through that. I don't regret my biopsy but I totally get why you've> > > > chosen not to go down that road.> > > > > In the meantime, celebrate stability!! Stable is my happy word!!> > > > > Beth> > > > > Age 48 Fibrotic NSIP 06/06> > > > >> > > > > Change everything. Love and Forgive> > > > >> > > >> > >> > > > > > > > > > Caro> > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, > > RHEUMATOID ARTHRITIS 03/08> > Mississippi> > __________________________________________________> >

[Guest guest]

Can I ask Bruce, what was your job before you helped us here? K IllinoisBruce Moreland wrote: This is one he really has to decide and then needs you to all supporthis decision whatever it is. Only he can decide the value of possiblyliving longer versus the value of quality of life. He needs to know thatits ok, however he chooses-that if he chooses length you won't bemoanthe side effects and the impact of them and if he chooses quality

youwon't in any way think of it as him valuing time with you less. It's adecision to be made with much consideration and based on some time, notbased on a moment or a day's feeling. But, none of us can ever trulyknow how someone else is feeling. We come closer to understanding eachother on this forum than most anywhere, but, still, we can't know theimpact on another, their outlooks, their pain, physically andemotionally. He can't possibly understand how this is all making youfeel and you can't put yourself in his place as much as you try.> > > > >> > > > > Sher,> > > > > I'm happy to hear the doctors have switched your diagnosis.NSIP> > > > is definitely preferable to IPF, the life expectancy is muchlonger> > > > and as a bonus, it does not always progress. As a matter offact,> > > > Dr. on at Duke just told me last month that he's seen> > patients> > > > with NSIP who have been "stable for decades." I mean I know thatmy> > > > experience may be different but anything that gives us hope is> > > > helpful!> > > > > Have they switched your dx based on the behavior of the> > disease or> > > > also on the

ct scan results? NSIP is usually very identifiable> > by CT> > > > scan. To identify the type of NSIP (fibrotic, cellular or mixed)> > you> > > > would need a biopsy. But at this point it probably doesn't> > matter as> > > > long as your stable. I understand why you wouldn't put yourself> > > > through that. I don't regret my biopsy but I totally get whyyou've> > > > chosen not to go down that road.> > > > > In the meantime, celebrate stability!! Stable is my happyword!!> > > > > Beth> > > > > Age 48 Fibrotic NSIP 06/06> > > > >> > > > > Change everything. Love and Forgive> > > > >> > > >> > >> >> >> >> >> > Caro> > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD

02/06, IPF 08/07, UIP 01/08,> > RHEUMATOID ARTHRITIS 03/08> > Mississippi> > ____________ _________ _________ _________ _________ __> >

[Guest guest]

Yes, you may ask.....lol

Ok, you didn't say anything about me answering, but I will anyway.

I was primarily in Accounting and Finance and sometimes Operations,

mostly for medium and large manufacturers. Generally CFO or VP of

Finance or Controller or VP of Operations or COO or, here's a good mind

boggling one, Director of Finance and International Taxation. All the

titles that can kill one and do nothing to enhance life. I was horribly

miscast into a field from a young age that I only realized recently

wasn't what I needed. I made multi-million dollar decisions without

hesitation but I would have far rather been helping a person in need

directly, whether through counseling or teaching or something that

allowed me to feel the reward of knowing I'd made someone's life better.

I lived what has unfortunately become the American Way replacing the

American Dream. I worked longer and harder to spend more on things I

didn't need. I did it while ignoring life and all it had to offer until

it destroyed me. Then I dealt with the mental illnesses that I'd long

had and simply had exacerbated through the years of stress and the

pressure I applied to myself to be perfect. I learned at an early age

nothing short of perfection was acceptable.

I started the journey of getting better in August 2005 and often it felt

hopeless and I saw no value at all in life. But, finally with the

world's greatest counselor helping me, with other situations being dealt

with, I began to improve. I couldn't face the world I did work in today

even if I didn't have PF. I could never deal with that again.

Fortunately, I wasn't diagnosed with PF when I should have been. I

wasn't strong enough to deal with it. I wouldn't have survived it

emotionally. But, by the time I was diagnosed I was able to handle it.

In fact, I guess its where some of my ability to deal with it does come

from-I'm one of the few people who can honestly say when diagnosed with

a terminal illness that I've been through worse. That's how I know the

pain of what so many are feeling emotionally. If you told me today I

could be cured of PF but have to return to the mental and emotional

state I was in, I'd refuse the offer. I'm more alive today than I've

been most of my life. I have far more trips planned as I went years and

years without taking any vacations. I wish I'd been as smart before as I

am now about life. I'm not nearly as smart about other things as I once

was, but don't care. I intend to live whatever life I have left to the

fullest I can. I just existed or survived most of my life but now I'm

living. Today that is a pretty active life. But even when the day comes

I'm in hospice and on morphine and have a little time a day I'm awake,

I'm going to use that time to communicate with friends and smile. Then

I'll drift off.

Oh and I was the most private person in the world and never shared

things about myself or my feelings. Guess thats changed too. When I grow

up I think I'll become SGIO. Oh, wait, she never has grown up. Guess I

won't either then. Maybe that explains the beanie babies and other bears

on my dresser.

More than you asked, but what you asked was so unimportant, what my job

was.

> > > > > >

> > > > > > Sher,

> > > > > > I'm happy to hear the doctors have switched your diagnosis.

> NSIP

> > > > > is definitely preferable to IPF, the life expectancy is much

> longer

> > > > > and as a bonus, it does not always progress. As a matter of

> fact,

> > > > > Dr. on at Duke just told me last month that he's seen

> > > patients

> > > > > with NSIP who have been " stable for decades. " I mean I know

that

> my

> > > > > experience may be different but anything that gives us hope is

> > > > > helpful!

> > > > > > Have they switched your dx based on the behavior of the

> > > disease or

> > > > > also on the ct scan results? NSIP is usually very identifiable

> > > by CT

> > > > > scan. To identify the type of NSIP (fibrotic, cellular or

mixed)

> > > you

> > > > > would need a biopsy. But at this point it probably doesn't

> > > matter as

> > > > > long as your stable. I understand why you wouldn't put

yourself

> > > > > through that. I don't regret my biopsy but I totally get why

> you've

> > > > > chosen not to go down that road.

> > > > > > In the meantime, celebrate stability!! Stable is my happy

> word!!

> > > > > > Beth

> > > > > > Age 48 Fibrotic NSIP 06/06

> > > > > >

> > > > > > Change everything. Love and Forgive

> > > > > >

> > > > >

> > > >

> > >

> > >

> > >

> > >

> > > Caro

> > > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08,

> > > RHEUMATOID ARTHRITIS 03/08

> > > Mississippi

> > > ____________ _________ _________ _________ _________ __

> > >

[Guest guest]

Wow! I am impressed that you have such a terrific attitude. I did read this to Don and I told him that the people on this board are not all "just" success stories, but they are people who are in different places in the disease. Some are very sick and some are just in the beginning stages. Thank you for giving me something to read to Don. All the hope and the success in the disease of pulmonary fibrosis. You really need to write a book. Your English teacher would be proud of you. Thank you for sharing a little bit of YOU with me. I hope everybody enjoyed it as much as I did. You know so much about this disease and right now, you are my new hero. k illinoisBruce Moreland wrote: Yes, you may ask.....lolOk, you didn't say anything about me answering, but I will anyway.I was primarily in Accounting and Finance and sometimes Operations,mostly for medium and large manufacturers. Generally CFO or VP ofFinance or Controller or VP of Operations or COO or, here's a good mindboggling one, Director of Finance and International Taxation. All thetitles that can kill one and do nothing to enhance life. I was horriblymiscast into a field from a young age that I only realized recentlywasn't what I needed. I made multi-million dollar decisions withouthesitation but I would have far

rather been helping a person in needdirectly, whether through counseling or teaching or something thatallowed me to feel the reward of knowing I'd made someone's life better.I lived what has unfortunately become the American Way replacing theAmerican Dream. I worked longer and harder to spend more on things Ididn't need. I did it while ignoring life and all it had to offer untilit destroyed me. Then I dealt with the mental illnesses that I'd longhad and simply had exacerbated through the years of stress and thepressure I applied to myself to be perfect. I learned at an early agenothing short of perfection was acceptable.I started the journey of getting better in August 2005 and often it felthopeless and I saw no value at all in life. But, finally with theworld's greatest counselor helping me, with other situations being dealtwith, I began to improve. I couldn't face the world I did work in todayeven if I

didn't have PF. I could never deal with that again.Fortunately, I wasn't diagnosed with PF when I should have been. Iwasn't strong enough to deal with it. I wouldn't have survived itemotionally. But, by the time I was diagnosed I was able to handle it.In fact, I guess its where some of my ability to deal with it does comefrom-I'm one of the few people who can honestly say when diagnosed witha terminal illness that I've been through worse. That's how I know thepain of what so many are feeling emotionally. If you told me today Icould be cured of PF but have to return to the mental and emotionalstate I was in, I'd refuse the offer. I'm more alive today than I'vebeen most of my life. I have far more trips planned as I went years andyears without taking any vacations. I wish I'd been as smart before as Iam now about life. I'm not nearly as smart about other things as I oncewas, but don't care. I intend to live whatever

life I have left to thefullest I can. I just existed or survived most of my life but now I'mliving. Today that is a pretty active life. But even when the day comesI'm in hospice and on morphine and have a little time a day I'm awake,I'm going to use that time to communicate with friends and smile. ThenI'll drift off.Oh and I was the most private person in the world and never sharedthings about myself or my feelings. Guess thats changed too. When I growup I think I'll become SGIO. Oh, wait, she never has grown up. Guess Iwon't either then. Maybe that explains the beanie babies and other bearson my dresser.More than you asked, but what you asked was so unimportant, what my jobwas.> > > > > >> > > > > > Sher,> > > > > > I'm happy to hear the doctors have switched your diagnosis.> NSIP> > > > > is definitely preferable to IPF, the life expectancy is much> longer> > > > > and as a bonus, it does not always progress. As a matter of> fact,> > > > > Dr. on at Duke just told me last month that he's seen> > > patients> > > > > with NSIP who have been "stable for decades." I mean I knowthat> my> > > > > experience may be different but anything that gives us hope is> >

> > > helpful!> > > > > > Have they switched your dx based on the behavior of the> > > disease or> > > > > also on the ct scan results? NSIP is usually very identifiable> > > by CT> > > > > scan. To identify the type of NSIP (fibrotic, cellular ormixed)> > > you> > > > > would need a biopsy. But at this point it probably doesn't> > > matter as> > > > > long as your stable. I understand why you wouldn't putyourself> > > > > through that. I don't regret my biopsy but I totally get why> you've> > > > > chosen not to go down that road.> > > > > > In the meantime, celebrate stability!! Stable is my happy> word!!> > > > > > Beth> > > > > > Age 48 Fibrotic NSIP 06/06> > > > >

>> > > > > > Change everything. Love and Forgive> > > > > >> > > > >> > > >> > >> > >> > >> > >> > > Caro> > > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08,> > > RHEUMATOID ARTHRITIS 03/08> > > Mississippi> > > ____________ _________ _________ _________ _________ __> > >