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I am so sorry, did not mean to do anything wrong, or step on any ones

> toes, just thought I was trying to help, I will stop posting

> immediatly, thanks. Sue

Dear Sue

Please be assured that my message was not meant as criticism of you or anyone

else.

You are obviously a kind hearted person to step in at a moments notice and

volunteer in

place of Narice.

Actually I was in a position to offer help as I have staff twiddling their

thumbs but it was

not clear from Lydias post to you if issues of permission or copyrite had been

addressed

nor who would benefit from any monies raised.

Best wishes

Chris

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-Thank-You

Sue

- In colon_cancer_support , " chrischristoph "

<chrischristoph@y...> wrote:

>

> I am so sorry, did not mean to do anything wrong, or step on

any ones

> > toes, just thought I was trying to help, I will stop posting

> > immediatly, thanks. Sue

>

>

> Dear Sue

>

> Please be assured that my message was not meant as criticism of you

or anyone else.

>

> You are obviously a kind hearted person to step in at a moments

notice and volunteer in

> place of Narice.

>

> Actually I was in a position to offer help as I have staff

twiddling their thumbs but it was

> not clear from Lydias post to you if issues of permission or

copyrite had been addressed

> nor who would benefit from any monies raised.

>

> Best wishes

>

> Chris

>

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  • 1 month later...

-

Pat,

What a small world it is.I had my surgery in Plant City, at Southern

Basptist, great hospital.Have not found a Onc. that I like. Went to

new one last week, and get my scan thursday, after I get to talk to

him a bit, I will know more. So nice to meet you, Did you have

surgery,and they got it all?? since no chemo??.........Sue

-- In colon_cancer_support , " imasewr " <imasewr@y...>

wrote:

>

> Hi Sue,

>

> I am your neighbor. I live in Valrico and love it here.

> Where did you go for your treatment, surgery, etc. I went to

> Hospital and my surgeon was Dr. Samy. Didn't have to have chemo but

my

> onc. is Dr. Robbins.

>

> Pat

>

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Sue and Pat, what state are you all in? Must be in the south. I am

near atlanta. Just curious if anyone is near here.

Thanks!!!

> >

> > Hi Sue,

> >

> > I am your neighbor. I live in Valrico and love it here.

> > Where did you go for your treatment, surgery, etc. I went to

>

> > Hospital and my surgeon was Dr. Samy. Didn't have to have chemo but

> my

> > onc. is Dr. Robbins.

> >

> > Pat

> >

>

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Hi Sandy,

We are in Florida, just outside of Tampa. Great area, lots to do.

Wish you were here.

Pat

-- In colon_cancer_support , " sandy391962 "

<sandy391962@y...> wrote:

>

> Sue and Pat, what state are you all in? Must be in the south. I

am

> near atlanta. Just curious if anyone is near here.

> Thanks!!!

>

> > >

> > > Hi Sue,

> > >

> > > I am your neighbor. I live in Valrico and love it here.

> > > Where did you go for your treatment, surgery, etc. I went to

> >

> > > Hospital and my surgeon was Dr. Samy. Didn't have to have

chemo but

> > my

> > > onc. is Dr. Robbins.

> > >

> > > Pat

> > >

> >

>

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  • 3 years later...

Sue,

You are not alone! This is so overwhelming and confusing and information from one respected source sometimes contradicts information from another equally respected source.

One thing that I would suggest is to know as much as possible about your own specific disease. Do you have IPF/UIP? Do you have NSIP? Do you have HP or DIP? Depending on what the answer is it helps to narrow down whether or not prednisone might be beneficial for you.

I have fibrotic NSIP and IV solumedrol (the iv equivalent of oral prednisone) when I was initially hospitalized saved my life and then oral prednisone for several months after that stablized me. I've been off prednisone for well over 2 years now and have remained stable. Z also has fibrotic NSIP and her doctor has kept her on a low dose of prednisone as he believes she needs it to maintain stability. Two different doctors, two different approaches. What matters most is that we both remain happily stable.

The way I look at this kind of stuff is to educate myself as much as possible, ask enough questions to drive all the doctors completely insane and then make a decision that you can live with. You can only do your best. That's all you can ask of yourself.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Monday, August 24, 2009 8:16:14 AMSubject:

Hello everyone,I have been trying to follow the posts regarding NAC as Dr. Padilla at Mt. Sinai, NYC suggested that I only use NAC (in pill form) from a Canadian Supplier who gets the product from Europe. It is costly from them (nearly $150.00 month with shipping) and I have no way of telling if it is the same product that I can get from other sources, much cheaper. The pill form is not covered by my insurance. My insurance does cover the liquid and I am going to give that a try. The other issue that is working away at me is the fact that "the experts" do not agree as to treatment. Some docs prescribe Prednosone others say it has not been proven to be effective. Since it can have serious side affects, how can a person make an informed decision? There is controversy in most every treatment plan. The more I read the more confused I have become. SuePF/1998

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