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  1. I had my 2nd treatment on my birthday 4/02. It...

    I had my 2nd treatment on my birthday 4/02. It went fine. Yes, my face looks like a baloon. Yuck. I'm doing fine but the pain is not going away. I had a CT and they are again watching a mass in...
  2. I'm thinking that too but I hate to go and they...

    I'm thinking that too but I hate to go and they look at me like there's nothign wrong. I'm sure we can all relate. It's so dang annoying. I can breathe ok, it just hurts with deep breaths and...
  3. The pain is getting worse by the day. Deep...

    The pain is getting worse by the day. Deep breaths hurt, getting up or sitting down hurts and driving is almost unbearable due to the movement. I think it's fluid again. I emailed my docs but they...
  4. My first infusion was 3/19 and it went smoothly....

    My first infusion was 3/19 and it went smoothly. I have another on 4/02. I was worn out that evening but my legs wouldn't stop jumping long enough to get any sleep. Other than that, I felt tired and...
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    My mother just told me about this today. It...

    My mother just told me about this today. It works for her.
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    DON'T GO! We have teamed up with Andrew and it...

    DON'T GO! We have teamed up with Andrew and it just won't happen. Get to feeling better!
  7. Thread: Iditarod

    by HopeinTN
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    http://d3r6t1k4mqz5i.cloudfront.net/wp-content/upl...

    http://d3r6t1k4mqz5i.cloudfront.net/wp-content/uploads/2011/12/Press-ReleaseGalleaScratch3-3-2014.pdf

    She is so tough and I can't imagine how hard thsi is on her body.
  8. Rituxan it is! I start with two infusions and...

    Rituxan it is! I start with two infusions and the first on 3/19 and the second on 4/02. My doc is head of the infusion center and picked tehse days so he could be there while I'm getting infused. ...
  9. Thread: Barbara N

    by HopeinTN
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    Give her a big hug from Nashville, Tennessee!

    Give her a big hug from Nashville, Tennessee!
  10. Thanks again fro the good read. I see my doc...

    Thanks again fro the good read. I see my doc tomorrow and put the treatment plan in place. Thanks for the good vibes.
  11. Great info. I was on CTX for 25 months and in...

    Great info. I was on CTX for 25 months and in remission the last 4. Surely this will work. I have had a crazy reaction to Benadryl in the past so thanks for mentioning that so I can tell them. My...
  12. Thread: Harold Ramis

    by HopeinTN
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    I just read this too. So sad. And very curious...

    I just read this too. So sad. And very curious about it.
  13. My doc emailed me and says that the labs and in...

    My doc emailed me and says that the labs and in connection with the biopsy results, show that my disease is active. I will meet with him on 3/04 to discuss RTX treatments. I will research some...
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    I hope you get to feeling better soon. Maybe you...

    I hope you get to feeling better soon. Maybe you need some sunshine and warmer temps. The winter weather can make people feel this way.
  15. Yes, I was only on CTX, and not tried anything...

    Yes, I was only on CTX, and not tried anything else. I’m aware of the bladder issues but I have to trust they know what they are doing. I drank a lot of water during this time and hopefully that...
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    This is great news and congrats on getting in...

    This is great news and congrats on getting in with him. I was with him just under two hours and then over to the hospital lab for maybe 20. I would stay the weekend if you are not from this area as...
  17. Thanks all for the well wishes. Yes, I have seen...

    Thanks all for the well wishes. Yes, I have seen Dr. Seo at Hopkins and he and my docs at Vanderbilt agreed on my treatment. It wasn’t an ordinary diagnosis as my labs did not reflect the disease...
  18. Possibly out of remission after just a few months

    I posted this in reply to another thread and wanted to share...

    I had a middle right lobectomy and upper right wedge resection back in May of 2011. It was before diagnosis and to rule out cancer....
  19. Thread: Lobectomy

    by HopeinTN
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    I had a middle right lobectomy and upper right...

    I had a middle right lobectomy and upper right wedge resection back in May of 2011. It was before diagnosis and to rule out cancer. The tissue samples did show Weg’s. I also had another mass start...
  20. Thanks for sharing. My maintenance drug is...

    Thanks for sharing. My maintenance drug is sulfamethoxazole-trimethoprim (bactrim) and tapering prednisone 1mg per month. In drug induced remission after 25 months of oral CTX.

    Awesome share!
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    First off, I got engaged over the weekend! No...

    First off, I got engaged over the weekend! No date set, but we dated, broke up and dated again for 6 years, so no plans to rush it now.

    I also had a great update from my docs recently. I have...
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    Great news, No Malignancy! The lymph nodes...

    Great news, No Malignancy! The lymph nodes contained Granulomas (this is part of the Wegener’s) and shows that my disease may be active. I will meet with my Rheumatologist 11/22 to determine next...
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    I had the surgery on Tuesday and came home...

    I had the surgery on Tuesday and came home Saturday night. Still waiting on the pathology report from the lymph nodes and golf ball size mass. The mass had attached itself to 3 ribs so they had to...
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    Thanks all! I'm sure it will be fine. I'll post...

    Thanks all! I'm sure it will be fine. I'll post again once I'm back from the hospital and they say more ike 3-5 days.
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    Will do. Thanks all for the well wishes. The...

    Will do. Thanks all for the well wishes. The surgery is Tuesday and I should be home by Friday or Saturday at the latest.
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