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Thread: Hello from The San Francisco Peninsula

  1. #1
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    Default Hello from The San Francisco Peninsula

    And yet another one....

    I was diagnosed a few weeks ago with Stage 4 lung cancer. However, that diagnosis was based on symptoms (chest pains, shortness of breath, and a strange but seemingly unrelated sinus condition), and on Xray and CT scan. I was told there was virtually no possibility of another diagnosis. Told the wife. Told the kids. Told the co-workers. Had a very unpleasant week.

    Then the CT "PET" scan came in, and called the diagnosis into some question. Then the biopsy. Oops, not cancer, but Wegener's. As I mentioned to my Rheumatologist, I'm one of the few who's really happy with the diagnosis.

    To make a long story short, I went on Prednisone immediately, and my symptoms began to melt away. I (like many of you) read every available piece of information, literature, white paper, medical paper, study on the subject, and decided that Rituxan was the way to go. Had the perhaps usual fight with the insurance company... a battle I was going to, and did, win. I've now just completed the 4th and last infusion, and by Monday next I will be down from the initial dose of 60mg to 30mg of prednisone per day. All-in-all I feel great, and enormously optimistic, and haven't had too many prednisone related side-effects (well besides the appetite thing, and the hyper-active nervousness thing, and the leg and arm cramps, and the tendency to tell a lot more jokes than usual, and maybe...just maybe... being a bit snappy with my wife and kids). Incidentally, I have no clear signs of renal involvement at this time, nor any other Wegener's symptoms.

    Oh, and a bit about me. I'm 66 (OK, 67 next week). Married for 30 years (but together for 48). Cathy is a retired urban planner. Two daughters, one 29 (just took the bar) the other 23 (a filmmaker). Accomplishments include an earlier government career, then sailed around the world, returned to build my own house, have kids, and build a manufacturing business with my sister - we now employ nearly 500 people. All in all a very good life so far, which I intend to hang onto for a long time, Wegener's or not.

    So that's it in a nutshell. I'll be checking in on occasion, and anyone with questions for a newbie is welcome to contact me.

    -Steve
    Last edited by wolfpv; 10-03-2014 at 10:12 AM.

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    Welcome! I am also in the Bay Area, in Santa Rosa. There are relatively few of us around. I hope you have a good team behind you. I have a wonderful rheumatologist through Kaiser but she is in San Rafael and she consults with a specialist at UCSF. It sucks that you have to be here but ... I am glad you don't have Stage 4 cancer. I was given a dual diagnosis of plasmacytoma and Wegener's so ... I faced them both. My cancer was relatively minor ... for now. I am hoping that monster stays away. My Wegener's has been easier to manage for me than others because I am limited in what it's attacked.
    It is nice to welcome another Northern California person!!!
    Officially Diagnosed 07/31/2013

    My blog: http://nikkinicolealison.com

    "It's no use going back to yesterday because I was a different person then" - Alice in Wonderland

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    Welcome Steve, know the peninsula pretty well...anyways, glad no cancer...some of the pre dxes people have received on here are almost ridiculous...mine went from severe infection to TB to 'we don't know'...then Mayo...all is well here too. Glad you have good docs. Check in, vent, share, ask...it's all here. Best to you.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Welcome Steve!
    Your story is similar to this lady, Patricia Dodge who has undetermined vasculitis of the lungs.
    https://www.youtube.com/watch?v=VfQh...B2048&index=41

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    Welcome Steve.

    i and quite a few others on here were given the lung cancer diagnosis initially and I know the relief you felt when you were eventually given the Wegeners diagnosis. I really don't have much to add except to say you have found the best place on the web for all the information and support that you might need. I am happy that the Wegeners has not attacked your kidneys and hope that it never does happen but as you probably know it can at some stage and the earlier this is detected the quicker it can be stopped in its tracks. So I would like to give you some advise and get yourself some urine monitoring strips, monitor your urine often and the first sign of blood and protein contact your doctor. I think everyone with this disease should and must do this.....even those who have kidney involvement who are controlled as it could be an early warning sign that you are flaring .

    Rose

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    Hi Steve and welcome.

    I was also one that was very happy to have a diagnosis of WG and not TB or cancer.

    I'm glad that they eventually got it correct for you and that you are receiving the right treatment
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Welcome to the forum. Sounds like you are in good hands and have educated yourself about the disease! It is crucial! Your cancer diagnosis must have been so hard on your family. My husband has lung involvement. Watch for clots. If you get short of breath don't ignore it please.
    - You can judge the character of a person by how they treat those who can do nothing for them.

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    Welcome Steve.

    I was yet another that was initially suspected with lung cancer.

    You can count yourself slightly lucky that your lung CT was looked at with an open mind which led on to Wegener's diagnosis.
    I had a lung biopsy to confirm lung cancer. As I didn't have lung cancer the biopsy came back negative for cancer, BUT I had to wait until my kidneys packed in until Wegeners was confirm with a kidney biopsy.
    Diagnosed April 1995

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    Welcome to the forum.
    ~ Bob

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    Welcome, Steve. I'm so glad you don't have lung cancer, but sorry you ended up with WG. However, it sounds like you are doing very well and have a great attitude, too. I'm glad you found us! I also have connections to the Bay Area, have lived there as a child, have relatives living there now, and lived in Davis for 22 years (not Bay Area but about an hour's drive northeast). San Francisco is a great city, and I know there is a world class WG specialist at UCSF, the one whom Nikki's doc consults with. Best of luck to you as you continue into remission! Keep us posted, and we want to hear anything that you want to talk about, any questions that you have.
    Anne, dx'ed April 2011

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