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Thread: Hi from KY

  1. #1
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    Default Hi from KY

    I'm glad I found this website. I had never heard of Wegener's until I was diagnosed with it at the end of August. I had breast cancer and chemo from February until April, 2012. Can't help but wonder if the chemo had anything with me getting this disease, anyone have an opinion? Anyway, after running a fever for a few days and feeling a sharp pain in my lung when I breathed, I went to the doctor. The xray showed my lungs were bad (they had be perfect in December of 2011, before my mastectomy), nodules and masses. So I had a CT scan, then needle biopsy in each lung, and was sent home with antibiotics to wait for the results. It was not cancer, thank goodness, but they didn't know what was causing it. Kept running a fever after the antibiotics ran out, so they prescribed another round. About 2 weeks into this, on a Sunday of course, I felt like I couldn't breathe so ended up in the emergency room and admitted for 5 days. My blood count had dropped to 6.9 so had 2 blood transfusions, plus a broncoscopy (?), and they sent me home to wait for the results again, not cancer but didn't know what. Five days later at my regular doctors office, I was still running a fever and an xray showed I had fluid in my lungs that had increased from the time I was in the hospital (I didn't know I had fluid in my lungs at all!) so they wanted me back in the hospital, stayed 10 days this time. They drew out 1 and 1/2 liters fluid from my left lung, then 2 days later did an open lung biopsy. The surgeon thought I had a fungal infection so they started me on an antifungal medicine, 2-3 days later they were getting results back and said it looked like I had Wegen's. So, was released from the hospital on August 24, and a week later had 3 IV infusions of prednisone, 3 days in a row, 600 mg each. Then started 50 mg pred. daily, plus an antibiotic 3 days a week. About a week later I had my first Ritoxin infusion, the first of 4, one week apart. My followup ct about 2 weeks after my last infusion showed my lungs were improving, and my bloodwork indicated my anca titer(?) had dropped to 130 from somewhere above 150. My pulmonary doctor said that was good. My oncologist (from my breast cancer) seemed confused about the numbers and I am scheduled for another Ritoxin infusion 2 months from the last one I had, that will make it the first week in December. I am feeling good, no more fever, and have finally regained most of my strength and weight, plus a couple pounds! I know the pred. can make you gain weight. I have terrible hot flashes, does anyone else have them from the pred? I am weening down, taking 30 mg now, going to 20 mg in a couple days. I also take tamoxifen which can make you have hot flashes, double whammy! I am concerned that I am getting the right kind of treatment, would like to hear what the treatment has been for others. Any advice would be appreciated!

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    Welcome sectec, glad you found and joined us. Lots of good people, good info, experience, ask lots of questions as you progress along, vent as much as you need...we've all been there and would like to help. Your experience sounds like a lot of ours...lungs, sinuses, aches, pains, etc. You appear to be on the correct drugs and seem to have normal responses. The heat flashes are the pred along with whatever else...as the pred reduces, so do the flashes. I currently am on pred and mtx...have been for just over 2 years, with one recent flare, been off pred once for a short time didn't do well, back on it. Your docs should be consulting with WG specialists if they are not and at all possible. Vasculitis Foundation offers phone numbers of cooperating WG specialists...go to their site. Best to you and yours.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Thanks for getting back to me and for the advice. I am going to try to find out if there are any specialists in my area. My pulmonary doctor is really nice and seems very involved with my case, he has talked with people at some university, maybe N or S Carolina, can't remember. He also talks with my oncologist, so hopefully I'll get the best treatment! Will keep in touch! Thanks again.

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    Welcome to the forum, the best place you can be since being dx'd with Wegeners. Phil on here recommends a doc at U of NC. Perhaps that's whom your doc talked with. Sounds like your doc knows where to consult on anything he needs help with. That is good. We are glad you are here, if you have to have Wegs. It is an indispensable resource and many of us check in here every day. We might even say we are addicted to it! I should speak for myself, I guess. But we are a very open and caring group and will always have a response to any of your concerns, listen to any rants, and do whatever we can to help. Keep us updated on your progress.
    Anne, dx'ed April 2011

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    Welcome to the forum. I'm glad you figured out how to start a thread.

    It sounds like you are on the right treatment, and I'm glad your doctor is consulting with someone from UNC. I also get hot flashes from the prednisone... I'm 22 but sometimes feel like I'm going though menopause. My doctor says it should go away when at a low dose. There is a lot of useful information here. Feel free to ask any questions you may have.
    Nothing can break you; you are much stronger than you think... look at what you've already survived.

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    Hi and welcome,
    it seems that you have been through too much tough times, with the cancer and the wg. but things are going to get better now for you
    if you have to have a wg, at least you can be a member of this amazing weggie family here. I couldn't have survive mentaly and maybe also physically, without this forum.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  7. #7
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    Hello sertec,

    Welcome to the forum! This is a good place to get advice, help, and to just vent when you need to blow off steam.

    Where are you from in Kentucky? My wife is originally from Paintsville (eastern part of the state about an hour south of Ashland).

    I think it's important that you have some kind of access to a WG/GPA specialist - whether it's via consultations with your local docs or in person. I go to Cleveland Clinic (about a two hour drive for me) and get very good case management there. Dr Alexandra Villa Forte is my WG/GPA specialist. She provides day-to-day treatment and works with my docs here in Columbus regarding labs and other special treatments. From Paintsville, I'm guessing that's a 6+ hour drive for you.

    Glad things are improving for you. Hope it continues.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  8. #8
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    Hi Sectech

    It has been remiss of me not to say hi and welcome sooner - I'm sorry.

    In answer to your first question - NO, I do not believe that the chemo you received, for the breast cancer, has caused your Wegeners.
    Chemo, at much lower doses, is what is used to get the immune system under control.
    When they thought that I may also have a type of leukemia, the Oncologist said that they would keep me on the same drugs but at higher doses.

    I believe that it was possibly the stress and anxiety of the breast cancer, that has exasperated and brought out the wegeners within you.

    I glad that things are looking better and look forward to hearing more from you
    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

  9. #9
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    Welcome Sectech,

    I'm new to the group also and find everyone here amazing. The love and support are evident in every post made. With that being said, you have been through a lot and I agree with Michelle that the stress of the cancer probably exacerbated your Wegs symptoms bringing them to the forefront. Sometimes it just takes the right critical combination of events to make it evident. Better sooner rather than later, however. Best advice is get a good Wegs doc or make sure yours is consulting with a good Wegs doc.

    Keep us posted and good luck. Glad to hear you are feeling better.
    Cindy



    Earth is just a stopover and whatever you achieve there is only a small part of the deal. The Afterlife Of Billy Fingers


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