new diagnosis

July 20, 2007

D.

Thank you so very much for your informative post. You are a living breathing example of a person who manages thier own healthcare. There have been other people on this board who got the diagnosis IPF that have continued searching and found that they are dealing with another disease.

I was told that I had bronchitis, virus, infection, inflamation, and TB. They then said it was the connective tissue disease affecting my lungs (no mention of PF) and the pulmos turned me back over to the rheumatologist....who told me to go home and pray. Like you, I searched out answers. I did do biopsy and many tests and scans. I finally found a doc who cares if I live or die. I changed rheumatologists also. I am now 10 years out from Biopsy and a death sentence.

I am so glad that you are getting proper medical care. You are an inspiration! I pray that your disease can be stablized or brought into remission. Thanks for sharing. It may save a life.

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.

>> I've been on this board for a few months but only posted one other > time when my pulmonologist wanted to put me on steroids. Based on > all I read and the input I received from this board I decided not to > do steroids. I also opted not to do a biopsy since naming whatever I > had wasn't that important to me. > > I had completed all blood work – with no clarification of what > disease we were dealing with. Another second or third round of blood > work then showed ANA antibodies present at 320 (>40 is considered > positive) indicating an autoimmune disease. The next round of blood > testing only 2 months later ANA was up to 640. In addition, I then > tested positive for anti-SCL-70 antigens, apparently specific for > diffuse systemic scleroderma. The difference in this type of > scleroderma is that it vigorously attacks internal organs with > necessarily showing skin involvement. > > At that time, I still refused to accept that diagnosis. I have > absolutely no scleroderma present externally and thought my Dr was > crazy. A visit to a rheumotologist confirmed the diagnosis. Since I > still wasn't ready to accept that diagnosis, I did some research and > found there were 17 scleroderma centers in the US that specialize in > this disease. One is a mere mile from my work location at > Woods University Hosp.. After my arguing with them (they > didn't want to accept me into program because I wasn't recommended > by a Dr) , I finally got an app't in May. Of course they confirmed > what other Drs have been telling me with even more detail. > > Bottom line: I have diffuse systemic scleroderma with pulmonary > fibrosis secondary. I am what they consider an ideal candidate for > pulmonary hypertension since I have a high lung capacity with poor > diffusion (43% last test – next test scheduled for August). My > kidneys and esophagus are also involved; however, I don't really feel > all that poorly. I have started chemo (Cyclophosphamide infusion) and > hope to stop the active inflammation that seems to be pretty > aggressive at the moment based on the last CAT scan. > > I am 60 years old, married with two grown children. Daughter married > with 16 month old twins (boy/girl). Son getting married on Sept 1. > Overall, I consider myself in good health (all things considered) > still working – manager of a commercial testing laboratory that > specializes in pharmaceutical testing. > > I have found the board to be very informative and helpful even though > I don't have the time to post frequently. Does anyone out there have > this same diagnosis. I'd be really interested in exchanging > experiences, etc. Sorry this is so long, I guess that's what happens > when you only post every 4 months. > > Dunn – New Jersey – Diffuse Systemic Scleroderma, Feb 07>

July 20, 2007

D.,

I second what Joyce D. wrote. Thank you for your post. People

sharing their stories and journeys here helps so many people and we

don't even realize it. We think we're going on and on about

ourselves and often apologize for it, yet we have no idea how it

affects others. What I got out of your post was that you were not

symptomatic and so this testing was vital to searching out what was

going on w/ your body. It was suggested to me just 2 weeks ago to

have additional bloodwork and I said " ya, ya, I know many people

have connective tissue disease or sarcoid or whatever and PF, but I

don't have any of those problems/symptoms " . This friend of a friend

who is a doctor said, " maybe you just didn't read the book " , which

at first I didn't even get. It was her way of saying not all people

present w/ the textbook case. She said it's like the person who has

a heart attack, but didn't have any chest pain or any of the

symptoms. These things happen and if we gather nothing else on this

site it's that though we do have a lot of shared symptoms and

struggles we all seem to have a different case. That may be the

biggest problem w/ PF, there is no textbook. Thanks again for your

post. I wish you the best of luck w/ your health and yes, please

post more often.

Kerry

IPF '01

S. IN

> >

> > I've been on this board for a few months but only posted one

other

> > time when my pulmonologist wanted to put me on steroids. Based on

> > all I read and the input I received from this board I decided

not to

> > do steroids. I also opted not to do a biopsy since naming

whatever I

> > had wasn't that important to me.

> >

> > I had completed all blood work – with no clarification of what

> > disease we were dealing with. Another second or third round of

blood

> > work then showed ANA antibodies present at 320 (>40 is considered

> > positive) indicating an autoimmune disease. The next round of

blood

> > testing only 2 months later ANA was up to 640. In addition, I

then

> > tested positive for anti-SCL-70 antigens, apparently specific for

> > diffuse systemic scleroderma. The difference in this type of

> > scleroderma is that it vigorously attacks internal organs with

> > necessarily showing skin involvement.

> >

> > At that time, I still refused to accept that diagnosis. I have

> > absolutely no scleroderma present externally and thought my Dr

was

> > crazy. A visit to a rheumotologist confirmed the diagnosis.

Since I

> > still wasn't ready to accept that diagnosis, I did some research

and

> > found there were 17 scleroderma centers in the US that

specialize in

> > this disease. One is a mere mile from my work location at

> > Woods University Hosp.. After my arguing with them (they

> > didn't want to accept me into program because I wasn't

recommended

> > by a Dr) , I finally got an app't in May. Of course they

confirmed

> > what other Drs have been telling me with even more detail.

> >

> > Bottom line: I have diffuse systemic scleroderma with pulmonary

> > fibrosis secondary. I am what they consider an ideal candidate

for

> > pulmonary hypertension since I have a high lung capacity with

poor

> > diffusion (43% last test – next test scheduled for August). My

> > kidneys and esophagus are also involved; however, I don't really

feel

> > all that poorly. I have started chemo (Cyclophosphamide

infusion) and

> > hope to stop the active inflammation that seems to be pretty

> > aggressive at the moment based on the last CAT scan.

> >

> > I am 60 years old, married with two grown children. Daughter

married

> > with 16 month old twins (boy/girl). Son getting married on Sept

1.

> > Overall, I consider myself in good health (all things considered)

> > still working – manager of a commercial testing laboratory that

> > specializes in pharmaceutical testing.

> >

> > I have found the board to be very informative and helpful even

though

> > I don't have the time to post frequently. Does anyone out there

have

> > this same diagnosis. I'd be really interested in exchanging

> > experiences, etc. Sorry this is so long, I guess that's what

happens

> > when you only post every 4 months.

> >

> > Dunn – New Jersey – Diffuse Systemic Scleroderma, Feb 07

> >

>

September 4, 2009

> Hello, new here.. I have joined the group because my husband was just

> diagnosed with prostate cancer.. The doctor's office called yesterday

> regarding the biopsy. We know nothing about this, and need to learn

> fast, I think.

>

> His age is 69, and his psa was 15.6. No Gleason yet. Appointment to go

> in next Tuesday.

I have some suggestions that will help to make well-informed

decisions.

Anecdotes contributed by other patients can be interesting, but

should never, ever, be relied upon as authority for one's own

decisions. In other words, what helps me might harm you and vice

versa.

" Find people who are more interested in helping you to learn than

teaching you what *they* think you need to know. "

-- Young, PCa Mentor

Phoenix 5

There is a lot to do.

(1) If applicable, I recommend having the biopsy specimens

examined by

a pathology lab that specializes in prostate cancer (PCa). Everything

that is done from here on depends upon the accuracy of the Gleason

scoring. Here is a list of such labs:

Bostwick Laboratories [800] 214-6628

Dianon Laboratories [800] 328-2666 (select 5 for client services)

Jon Epstein (s Hopkins) [410] 955-5043 or [410] 955-2162

Jon Oppenheimer (Tennessee) [800] 881-0470

Lucia (303)724-3470

This is a " second opinion " and should be covered by

insurance/Medicare. The cost, last I heard, was about $500. More

if further tests, which might be prudent, are ordered.

The chosen lab can give instructions on shipment arrangements.

In civilized jurisdictions, those specimens are the property of the

patient and not the medic, not the lab. Sometimes it is necessary to

educate them on that point.

(2) The authoritative website of the Prostate Cancer Research

Institute (PCRI) at http://prostate-cancer.org/index.html

is an excellent beginning.

See also

http://prostate-cancer.org/education/education.html#newly_diagnosed

Some medics who specialize in treatment (tx) of PCa are listed via

this portal:

http://prostate-cancer.org/resource/find-a-physician.html

If a particular medic is not suitable due to distance (but there

are men who travel thousands of miles for treatment) or

otherwise, there is no harm and much possible gain in simply

asking for a referral.

There are also men whose primary medic is some distance away, but

who receive their routine treatment (tx) near home.

(3) I heartily recommend this comprehensive text on PCa: _A

Primer on Prostate Cancer_ 2nd ed., subtitled " The Empowered

Patient's Guide " by medical oncologist and PCa specialist

B. Strum, MD and PCa warrior

Donna Pogliano. It is available from the PCRI website and the

like, as

well as Amazon (30+ five-star reviews), & Noble, and

bookstores. A lifesaver, as I very well know.

(4) Personal contact with other patients can be very helpful. Local

chapters of the international support group Us Too can be found via

their website at http://www.ustoo.com/chapter_nearyou.asp

Regards,

Steve J

" Empowerment: taking responsibility for and authority over one's own

outcomes based on education and knowledge of the consequences and

contingencies involved in one's own decisions. This focus

provides the

uplifting energy that can sustain in the face of crisis. "

--Donna Pogliano, co-author of _A Primer on Prostate Cancer_,

subtitled

" The Empowered Patient's Guide. "

September 4, 2009

>

> Hello, new here.. I have joined the group because my husband was just

diagnosed with prostate cancer.. The doctor's office called yesterday regarding

the biopsy. We know nothing about this, and need to learn fast, I think.

>

> His age is 69, and his psa was 15.6. No Gleason yet. Appointment to go in

next Tuesday. He has no symptoms, other than a slight backache which probably

isn't related.. his back has given trouble for years.

>

> Terry, many thanks for the email. Lots to read there today.

>

> Dolores

>

Hi Dolores,

My husband was treated with IMRT treatment. My suggestion to you is just seek

out as much information as possible. Look at all your options and choose the

one that is best for the both of you. We saw five different specialists and all

said my husband needed radiation...that's the only thing they agreed on. We

tried to get Proton Beam Radiation. It's only available in certain hospitals,

but we felt that was the best option. But when we saw the specialist for Proton

Beam he said my husband's lymph nodes had to be radiated as well. We wanted

Proton Beam because of the few side effects. I'll be praying for you..it's not

an easy time.

Best Wishes,

September 4, 2009