Guest guest Posted January 1, 2008 Report Share Posted January 1, 2008 > > > > New to the group. Interstitial pneumonitis w/double pneumonia 12/06. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2008 Report Share Posted January 1, 2008 Well, in one way or another most of us have experienced most of what you're describing. I'd never heard of the disease before being told I had it. The most important things the doctors don't help much on are helping educate you as to the choices you may need to make in terms of diagnosing and treatment and how to live with the disease. We're about education and living and support. None of us know about tomorrow but we're all trying to make the most of today. For me today that includes Levaquin too. I do have IPF and have chosen not to go on medications including imuran and prednisone. I did choose to have a VATS biopsy to confirm absolutely which form of disease I had. Now, I may be the second most insane person here, depending on the day. I won't tell you the Aussie who is number one, but you'll find out. Just to show craziness, last night as I was in the ER afraid they might keep me, I was most worrying about how was I going to keep in touch with my friends here if they did that. Even as they prescribed Levaquin I wanted to come here to learn more. And, actually the hospital is pretty nice with large flat screen tv's, all private rooms, room service for your meals (order from menu when you want). But I did remember two years ago the internet on the tv was slow and not even sure if they still have it. It's quite common to have autoimmune diseases too. Sounds like right now you're still in the " somebody please tell me exactly what I've got " mode. I'm assuming you're seeing a pulmonologist and a rheumatologist? You'll have to push them for answers and go prepared with questions and issues and hold them until they answer your questions. If you don't feel you're getting what you need, don't hesitate to change doctors. Also, many recommend teaching hospitals but I'm not certain how close you are to one. > > > > > > New to the group. Interstitial pneumonitis w/double pneumonia > 12/06. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2008 Report Share Posted January 1, 2008 Well yes and no. Last year Mayo Clinic read my lung biopsy when the locals could not get a leg up on whatever was going on. They started with the pneumonia with the pulmonologist thinking maybe congestive heart. Not, thank God. Two ICU stays & two chest tubes later they finally gave me a diagnosis but really did not explain well about the fibrosis that was killing my alveola. And I really didn't know until 2 weeks ago the pneumonitis could flare up again. That would really have been nice to know. There just isn't a lot of information about my specific disease that I have been able to find but it mimics pneumonia. I have seen the pulmonologist about every 2 months since last December, also the cardiologist, cardio-thoracic, rheumatologist, gastro. I have taken lots of Prednisone and it does work as long as I stay about 20 mg a day. The pulmonologist still thinks something else is causing all this which is where the lupus comes in. I just don't have a second positive test yet. My body is caving in on itself. I'm mostly just trying to see what other people dealing with this monster are going through so I can determine what I need to worry about and when. I know when I am having a short-breath day but this whole flare-up thing caught me by surprise. You mean I'm not through with this and it can get worse? Since they can't find a root cause we don't know where to start and what not to do. It is so good to find a group that understands exactly what I am going through. I am the youngest person in my rehab group - me and the old people. This isn't supposed to be happening! And all the old people made it through Christmas without getting sick. Three weeks ago I celebrated walking a mile in 24 minutes. This is just WRONG. BTW I hate the Prednisone and would stop it if I was not so afraid of what would happen without it. > > > > > > > > New to the group. Interstitial pneumonitis w/double pneumonia > > 12/06. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2008 Report Share Posted January 1, 2008 Welcome to our group. diana nsip 2002lsmith7892006 wrote: New to the group. Interstitial pneumonitis w/double pneumonia 12/06. Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2008 Report Share Posted January 1, 2008 Well, prednisone is a decision we all have to make personally. Now, you haven't mentioned oxygen or your blood oxygen levels. Are your sats staying above 90? With PF, oxygen becomes the biggest factor and maintaining the levels, normally through supplemental oxygen. If like most of us, you're the only one with PF in your rehab group. If by interstitial pneumonitis you are referrring to usual interstitial pneumonitis, also known as Idiopathic Pulmonary Fibrosis, then I'd be very shocked that you weren't requiring oxygen. Also, it is the form of PF where the benefit of prednisone is most questionable. But if you feel you're benefitting greater than any side effects then its working for you. Now if you were found to have lupus it becomes interesting. Now it could be too independent diseases and for UIP or IPF there is no cure other than a transplant, if it were caused by the lupus, treating the lupus could be the key to slowing it down. When its a secondary disease you work hard at treating the primary. If you're using the term interstitial pneumonitis is the general sense as we might say Pulmonary Fibrosis, then it could be one of up to 200 forms, the most common being: usual interstitial pneumonitis (UIP) or idiopathic pulmonary fibrosis (IPF) nonspecific interstitial pneumonitis (NSIP) bronchiolitis obliterans-organizing pneumonia (BOOP) respiratory bronchiolitis associated interstitial lung disease (RB- ILD) desquamative interstitial pneumonitis (desquamative IP) lymphocytic interstitial pneumonitis (LIP) acute interstitial pneumonitis Those other than UIP/IPF do tend to respond to prednisone frequently. I would think from the lung biopsy you would have it specifically identified and maybe I just missed that in this quagmire of terms. > > > > > > > > > > New to the group. Interstitial pneumonitis w/double > pneumonia > > > 12/06. > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2008 Report Share Posted January 1, 2008 Lsmith, Welcome to the group. Please tell us about you. We're sorry that you have needed to find us. How did you get your diagnosis? Where do you live and what do you enjoy doing for plain old fun? Z fibriotic NSIP/05 Z fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! Potter, reader,carousel lover and MomMom to Darah “I’m gonna be iron like a lion in Zion” Bob Marley lsmith7892006 wrote: New to the group. Interstitial pneumonitis w/double pneumonia 12/06. No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.17.13/1205 - Release Date: 12/31/2007 3:32 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2008 Report Share Posted January 2, 2008 Hi there, Welcome to our corner of t'internet. I've not been here all that long and this is a wonderful site, they are a huge support and blimey, they don't half catch you when you start to fall! Love Ze xx Dermatomyositis, Pulmonary Fibrosis, and a whole host more for years!!! >> New to the group. Interstitial pneumonitis w/double pneumonia 12/06.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2011 Report Share Posted August 6, 2011 I can think of one positive for Lupron, in many cases it slows or stops the progression of PCa for many many years. Yes it does have se wicked side effects but considering the alternative, continual growth of cancer, I think the side effects are tolerable. It is worth taken even after the gland is gone. Many Oncologists recommend upto two years worth after radiation, and in my case that was post surgery too. After three years I am looking forward to not getting another shot in a couple of months. Rody Here: November 3rd I see an Oncologist about Lupron Injections for a time period. I am a Forum mostly females and I have yet to find anything positive about this medication. There is a medication out of Canada Alidart (sp). The side affect according to 100% of this forum have very bad things to say about this poison they call it. I guess it is suppose to be a sorta blocker to keep Tetrestrone (sp) away from where prostarte use to be. See, I don't have this gland anymore but do have cancerous left behind (missed). Radiation has been talked about also. Do you not have to have a Pet Scan to locate the missed site, or even if that will. 0 Every possible success. Learn all you can; this site is a HUGE help. There's more BS out there on the 'net than on a farmer's field, so scrutinize everything. As we used to say in journalism school, "If your mother tells you she loves you, check your sources." Tom on a sir From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of uncowled Sent: Saturday, August 06, 2011 8:24 AM To: ProstateCancerSupport Subject: Hi All Just starting my journey, psa above borderline, digital exam felt lump, biopsies positive, two days ago had CT, Bone scans x-rays etc. Doc visit a week wednesday. No virus found in this message. Checked by AVG - www.avg.com Version: 10.0.1391 / Virus Database: 1520/3815 - Release Date: 08/06/11 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2011 Report Share Posted August 7, 2011 HI Newcomer, Just want to let you that you are in the right place here. My husband has Prostate Cancer too..but his was a Gleason 9 and he had the aggressive one,,,but we still took about a month to find what my husband was comfortable with. You are never alone here, there is always someone to answer your questions,,I can't tell you how much this group has help us. And it's a great place to vent also. I will keep you in my thoughts and prayers,,wish you the best Sincerely, Sheila Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2011 Report Share Posted August 8, 2011 There are three good " new to prostate cancer " articles at malecare.org. They're titled: " read this first " " read this next " " second opinion on your biopsy " And lots of other good articles and lists of questions and other websites, etc. Great that you found this listserv, too! Darryl Sent from my iPad Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2011 Report Share Posted August 8, 2011 Chuck I'm sorry many omissions my apologies. Bob is the name. The scores etc I do not have at hand, the doc took 12 samples at the biopsy. My next visit to hear the results of the scans etc is on the 17th August at 10:50 EST I will report on his briefing and establish the answers to your questions. Until then I will keep a watching/learning brief... Thank you all for your replies Bob Quote Link to comment Share on other sites More sharing options...
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