Dorothy

[Guest guest]

Dorothy,

I would feel very confident with Dr Noble too. Just the way I'm completely comfortable with Dr. on and confident in his expertise.

I might ask him if it would be a good idea to have your slides evaluated at Duke, it couldn't hurt to have their opinion. And as Bruce pointed out it gives Dr. Noble the opportunity to actually have a face to face with the patholgist.

Just keep taking good care of yourself!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Fri, November 6, 2009 3:11:02 PMSubject: Re: Re: Perfinedone application made to the FDA

Pink,

Thanks - makes sense to me and it makes me feel good believing in Dr. Noble Dorothy Reinecke

From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>To: Breathe-Support@ yahoogroups. .comSent: Fri, November 6, 2009 2:41:27 PMSubject: RE: Re: Perfinedone application made to the FDA

I think he is not so interested in a label as trying to address the condition & slow progression

Dorothy

yes this makes a lot of sense to me

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: Dorothy Reinecke <atlantadorothy@ att.net>Subject: RE: Re: Perfinedone application made to the FDATo: Breathe-Support@ yahoogroups. comDate: Friday, November 6, 2009, 9:20 AM

Beth,

No - Dr. Noble never asked for the slides. On my first appointment he asked for all the data from 18 months at Mass General, labs, CTs, etc. but not the slides from the biopsy. There is no doubt from the CT scans past and current that there is plenty of fibrosis,honeycombi ng, etc. and enlarging pulmonary artery but not enough yet to qualify as full blown PH. I did have a right heart cath which also confirmed 'mild' PH, but not requiring meds yet. Knowing Dr. Noble as long as I do now, I think he is not so interested in a label as trying to address the condition & slow progression. Does this make sense. to you? I may just ask if he would like me to bring the slides - at this point it couldn't hurt, right?

I would love to plan to meet when I come to Durham for my Dec. 17 appointment. We are flying in on the 16th and staying at the Residence Inn this time.

We have always stayed at Millennium since Aug. 07 - just decided on a change of scenery :-).

Dorothy Reinecke

From: Breathe-Support@ yahoogroups. com [mailto:Breathe- Support@yahoogro ups..com] On Behalf Of BethSent: Friday, November 06, 2009 7:51 AMTo: Breathe-Support@ yahoogroups. comSubject: Re: Re: Perfinedone application made to the FDA

Dorothy,

My memory is not terrific so forgive me in advance. Have your slides been looked at by a Duke pathologist? I thought they had but I could be thinking of someone else. If they haven't I would strongly recommend that being done.

Bruce gave you lots of good info so I won't repeat it here. Let me know if there's anything I can do for you Dorothy and let's make sure we get together again when you're up here in December.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: "atlantadorothy@ att.net" <atlantadorothy@ att.net>To: Breathe-Support@ yahoogroups. comSent: Thu, November 5, 2009 11:11:45 PMSubject: Re: Re: Perfinedone application made to the FDA

Thanks so much bruce,I will keep going to duke every three months and keep testing.One clarification to my not - I wrote the diagnosis from my visit to duke in may. But the diagnosis from my biopsy pathology report is UIP. When I went to mass general in august 'o5 I brought my slides their pathology also concluded UIP. So what do you understand - has duke changed the diagnosis or are they just not saying UIP? Do you think I should as for clarification when I go back to duke?Many thanks for your inputDorothy

Sent via BlackBerry by AT & T

From: "Bruce" <brucemoreland@ gmail.com>

Date: Fri, 06 Nov 2009 03:42:44 -0000

To: <Breathe-Support@ yahoogroups. com>

Subject: Re: Perfinedone application made to the FDA

DorothyYour situation isn't that odd or strange, believe it or not.. I wouldrecommend continued rheumatological labs and exams based on what yousay, probably as frequently as every three months. In fact, I'm in asomewhat similar situation and my rheumatologist insists on every twomonths, has made referrals for more opinions, and I may end up going toDuke. Now, one would say, why more labs. Because what might today beclassified as Undifferentiated Connective Tissue Disease can thenmanifest itself. Why hasn't it so far? Perhaps because its often delayedor perhaps because the meds you've been on have kept it from doing so.The meds may have treated the connective tissue disease even though noone yet knows which one you have.The muscle pains certainly sound like a Myositis such as Dermatomyositisor Polymyositis so based on that you might find a muscle biopsyrecommended next.The main

thing I'd say is that the possibility of an underlyingconnective tissue disease could still be in your favor as to delayingthe progression of the fibrosis. Perhaps it will become more obviousover time and be treatable. Or, perhaps you've already been treating it.It's worth continuing to chase it. It took several years for Beth'sto be to the point they could diagnose it confidently. There's verystrong argument that I might have one but no one has been able todiagnose it yet. My rheumatologist has suggested many different biopsiesat one time or another but I'm willing to wait (kidney biopsy, musclebiopsy, lymph node biopsy, skin biopsy, lip biopsy, another lungbiopsy.....lol) . I do believe that at some point one of the labs thatjumps back and forth may just take off upward or some additional symptomthat will clear things up might emerge.So, I think the following for myself personally:1-As

long as it doesn't manifest itself, it's at least somewhat undercontrol so I won't worry too much.2-However, I will continue to monitor and see doctors so that if andwhen it does manifest itself, it will be discovered and if any treatmentis appropriate, I can get it.I also see you as having one distinct advantage over me. You have an ILDbut it is not identified as UIP and based on the treatments may well beone of the others that is treatable and is quite commonly found to havean underlying connective tissue disease. In my case, mine is determinedfirmly to be UIP and so that probability lessened.Don't give up. Time may be here to repeat a major workup as you have newmore detectable symptoms.> >> > Does anyone know how long it takes for approval - are we looking> at months, or years?> >  Dorothy Reinecke> >> > UIP-7/05> >> >> >> >____________ _________ _________ __> > From: "Paradis3@ ."

Paradis3@> > To: Breathe-Support@ yahoogroups.> <mailto:Breathe- Support%40yahoog roups.com> com> > Sent: Thu, November 5, 2009 9:37:47 AM> > Subject: Perfinedone application made to the FDA> >> > Â> > I don't know if it's new news, but it is to me. Intermune has> applied for a new drug approval for Perfinedone as a treatment for> pulmonary fibrosis. I was alerted to that by the coalitionforpf.> org I'll check with my pulmo guys and see what that means, if> anything. Some time ago I asked them about the drug, having heard> it was in testing, and didn't get much of a rise out of anybody, so I> dunno.> >> > Bill C. IPF 10/08> > N.E. PA> >>