User Tag List

Likes Likes:  4
Results 1 to 6 of 6

Thread: Its always something

  1. #1
    Join Date
    Nov 2015
    Posts
    368
    Post Thanks / Like
    Mentioned
    5 Post(s)
    Tagged
    0 Thread(s)

    Default Its always something

    Hello again - I first started this journey in November 2015 when I was diagnosed with GPA. I found this site and learned so much and was comforted by the stories and the
    wonderful people I came across. I have had some issues as many of us do and
    tried to live my life and deal with the disease as best I could. I have kept a low
    profile on the site but would often check back with questions or information. I
    find myself checking back again to try and gather information about reoccurring lung nodules.
    I have had these before and had a biopsy before which went terribly wrong and I find
    myself in a situation where a biopsy is again needed. A new pulmonary nodule which
    is growing - in the past these nodules have shrunk with treatment - on Rituxin with
    currently no B cell. Just wanted to reach out to learn if anyone has had a similar experience?

    Thanks,

  2. #2
    Join Date
    Jul 2010
    Location
    see map location in MN
    Posts
    4,322
    Post Thanks / Like
    Mentioned
    14 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Its always something

    Sounds like a stressful experience. Let us know what they learn. Hope it is good news for you.
    Knowledge is power! Wisdom is using it to make good decisions!

  3. #3
    Join Date
    Nov 2015
    Posts
    368
    Post Thanks / Like
    Mentioned
    5 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Its always somethingmore

    Thanks drz - waiting for repeat Anca to come back. If that is positive it points more towards another GPA nodule, if it is negative points more towards malignancy but need the biopsy to be sure. This spot is about 2cm by 1.8cm. Time will tell I guess.

  4. #4
    Join Date
    Jul 2010
    Location
    see map location in MN
    Posts
    4,322
    Post Thanks / Like
    Mentioned
    14 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Its always somethingmore

    Quote Originally Posted by Middlesista View Post
    Thanks drz - waiting for repeat Anca to come back. If that is positive it points more towards another GPA nodule, if it is negative points more towards malignancy but need the biopsy to be sure. This spot is about 2cm by 1.8cm. Time will tell I guess….


    waiting for results is stressful so hang in there and hope for the best. when is the biopsy?
    Knowledge is power! Wisdom is using it to make good decisions!

  5. #5
    Join Date
    Nov 2015
    Posts
    368
    Post Thanks / Like
    Mentioned
    5 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Its always something

    Well ANCA came back negative - points to GPA not being active. The biopsy is Nov 30th. Took care of a patient today (I’m a nurse and still working) and he has nodules that come and go and he does not have GPA. He had a pneumothorax years ago and they used talc as a treatment and the remnants of this has given him nodules that come and go.

    Time will tell …. Someone wrote that GPA is the gift that keeps on giving. Not sure if I would consider it a gift however. ����*♀️

  6. #6
    Join Date
    Nov 2015
    Posts
    368
    Post Thanks / Like
    Mentioned
    5 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Its always something

    My CAnca is neg and all my labs point to no active disease. I am on Rituxin, low dose prednisone and I have been dealing with this disease since 2015 with many ups and downs - sinus, eye, nose, lung, kidney involvement. I had written here that I had a lung lesion that was growing and concerning for cancer - docs wanted lung biopsy and I reluctantly agreed since the first biopsy I had back in 2015 did not go well and I ended up with a lung full of blood requiring chest tubes, pro longed hospital stay, home oxygen for a few more months and I could not work. Battled back from that and able to go back to work thankfully. Anyway…this time all went well with biopsy - I do understand that granulomas from GPA can look like cancer. To cut to the chase no malignant cells which is wonderful. I know everyone presents different and I know now I can not rely on my labs since even with negative labs granulomas are growing again ���� It is disheartening that this disease can reck havoc with your body as well as your mind. We all must be vigilant! I am fortunate to still be alive and I am grateful for the advances they have made with this disease.
    Last edited by Middlesista; 12-04-2021 at 02:10 AM.

  7. Likes Pete, Masha, Dirty Don, [email protected] liked this post

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •