User Tag List

Likes Likes:  0
Page 1 of 2 12 LastLast
Results 1 to 10 of 13

Thread: Wegeners and CLL - just scared today

  1. #1
    Join Date
    Sep 2010
    Posts
    102
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Unhappy Wegeners and CLL - just scared today

    I have had Weg's for approx. 9 years now. Been on multiple medications. RTX off and on for 3 years. This year they diagnosed me with CLL (chronic leukemia). Now I have to deal with that. They use RTX to treat it also. Last time I went to the cancer doc he said my numbers are rising. When I saw the Weg doctor last week I told him I had a bad cold, lasted 2 weeks. He thinks I had relapse of the Weg's. Go to the cancer doc tomorrow to see how my numbers are doing. If not good I think they will recommend another RTX treatment. I have tried to stay strong thru all this but with working full time I am worn out. The sad part it that I started a weekly workout routine the beginning of the year, thought it would help. Sorry if am complaining but I really don't think my family/friends understand sometimes how bad I feel. Just needed a shoulder to cry on today -

  2. #2
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,992
    Post Thanks / Like
    Mentioned
    24 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by Meredith View Post
    I have had Weg's for approx. 9 years now. Been on multiple medications. RTX off and on for 3 years. This year they diagnosed me with CLL (chronic leukemia). Now I have to deal with that. They use RTX to treat it also. Last time I went to the cancer doc he said my numbers are rising. When I saw the Weg doctor last week I told him I had a bad cold, lasted 2 weeks. He thinks I had relapse of the Weg's. Go to the cancer doc tomorrow to see how my numbers are doing. If not good I think they will recommend another RTX treatment. I have tried to stay strong thru all this but with working full time I am worn out. The sad part it that I started a weekly workout routine the beginning of the year, thought it would help. Sorry if am complaining but I really don't think my family/friends understand sometimes how bad I feel. Just needed a shoulder to cry on today -
    We are here for you, Meredith, with lots of shoulders to cry on. Most of us can relate to family and friends not really understanding. I don't know how I'd cope with the additional CLL diagnosis. I can only hope it is one of the more treatable varieties. And, already having been on RTX, you at least know how that goes for you. You are in my thoughts today, and please keep us posted.
    Anne, dx'ed April 2011

  3. #3
    Join Date
    Oct 2011
    Location
    near Phx, AZ
    Posts
    1,809
    Post Thanks / Like
    Mentioned
    7 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hang tough Meredith...try to keep all things in separate boxes as it were & deal with them as they come...best to you...we're here.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


  4. #4
    Join Date
    Mar 2014
    Posts
    195
    Post Thanks / Like
    Mentioned
    3 Post(s)
    Tagged
    0 Thread(s)

    Default

    My sympathies are with you Meredith. Sometimes it can all feel overwhelming. Hope you can get some time to yourself to get rested physically and emotionally. All good wishes for you, and keep us informed as the treatment proceeds.

  5. #5
    Join Date
    Apr 2011
    Posts
    244
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Meredith,
    Relax & Time Out!!!!!!

    I was diagnosed with Wegs 8/07 & CLL on 5/09. I have never
    been treated for CLL but have been treated several times for wegs.
    When you say rising numbers, if you mean WBC, that is almost never a
    reason to treat. You have time—CLL, unlike other blood cancers , is
    almost never an emergency. I know this can seem overwhelming, but I
    promise—you are going to be OK.

    More than anything else you need to educate yourself. Here are
    websites with good info:
    Home - CLL Society
    and really knowledgeable people on the acor list serv—join it:
    LISTSERV 16.0 - CLL List at LISTSERV.ACOR.ORG

    This one is no longer active, but her info for the newly diagnosed
    is excellent. (She retired)
    CLL Topics Updates: Dedicated to the Fight Against Chronic Lymphocytic Leukemia

    Those 3 are a good beginning.

    I know it's a bore, but you have to be your own advocate, so find
    out everything you can. Do you have a cll specialist? It's important
    that you at least see one for a second opinion before you do any
    treatment. CLL is pretty rare & the average oncologist doesn't
    see it very often & might not be up to date on all the new drugs that have come out in the last few
    years.

    You are the only other person I know of with both CLL &
    Wegs—aren't we lucky!!!We are really a select group!!! Please
    private message me if you want, I'd be glad to share any info I can

    Best Wishes!!!

  6. #6
    Join Date
    Jul 2015
    Location
    Arizona
    Posts
    910
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by Meredith View Post
    I have had Weg's for approx. 9 years now. Been on multiple medications. RTX off and on for 3 years. This year they diagnosed me with CLL (chronic leukemia). Now I have to deal with that. They use RTX to treat it also. Last time I went to the cancer doc he said my numbers are rising. When I saw the Weg doctor last week I told him I had a bad cold, lasted 2 weeks. He thinks I had relapse of the Weg's. Go to the cancer doc tomorrow to see how my numbers are doing. If not good I think they will recommend another RTX treatment. I have tried to stay strong thru all this but with working full time I am worn out. The sad part it that I started a weekly workout routine the beginning of the year, thought it would help. Sorry if am complaining but I really don't think my family/friends understand sometimes how bad I feel. Just needed a shoulder to cry on today -
    Hi Meredith,

    I know you're just looking for a shoulder but how about some advice. Stop working. Your situation doesn't sound like something you can work around and there is no way you can take care of you while holding a job. I just got approved for social security dissability. You would have no trouble qualifying but not if you're still working. It's a double edged sword sorta thing but it doesn't look like a choice. I'd be in much better condition now if I'd taken my own advice a few years ago. Your situation should, like me, put you on the fast track for approval. It still took four months but was relatively easy, the people I dealt with were fantastic.

    Also... I'm new here but it does not take long to realize you don't have to appologize for complaining.

    Gary

  7. #7
    Join Date
    Nov 2011
    Location
    Ohio
    Posts
    1,970
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Meredith,sorry you ( and JeanMarie ) got hit with a double whammie. Hopefully those websites she posted will help you. I was also going to suggest, like Gary did, was to get on S.S. You have to much on your plate to work and try to stay healthy. Keep us updated on your apt tomorrow,maybe that dr. can write on a script pad that you are unable to work. Take that ,along with any med records you have and file. And there always a shoulder here. Take care and be strong
    Life isn't about how you survive the storm, but how to dance in the rain !

  8. #8
    Join Date
    Oct 2010
    Location
    Ohio
    Posts
    819
    Post Thanks / Like
    Mentioned
    3 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Meredith,
    I am so sorry that you have to deal with worrying about getting the correct tx and have to work totally wiped out. You would qualify for SSI, pretty much right away. If you ask your doctor to write you a script, that you are unable to work, it helped my case, Deb told me that almost 4 yrs ago and I had all my records. I file it myself and was awarded with 3wks of them receiving the papers. I have a lot less stress now and don't seem to get as many infections. I'm I wrong, but I thought that getting CLL is in the warning papers of RTX? I wish you all the best and please let us know how you are doing.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


  9. #9
    Join Date
    Jul 2010
    Location
    see map location in MN
    Posts
    4,374
    Post Thanks / Like
    Mentioned
    16 Post(s)
    Tagged
    0 Thread(s)

    Default

    Any time you have more than one serous chronic illness it seems to compound problems. Sorry you have to deal with both. Best wishes for better health.

    The treatment for serious case of Wegs generally increases the risk of several types of cancer. Just as most cancer treatments also increase the risk for later development of other types of cancers. There are several that my doctors monitor me for. But our illness and resultant treatment also increase our risk for other health problems that are much more likely to occur than cancer.
    Knowledge is power! Wisdom is using it to make good decisions!

  10. #10
    Join Date
    Sep 2010
    Posts
    102
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Just got back from the CLL doctor today - white count is up to 21,000. He did not seem to concerned. Will monitor me with some new blood tests (guess they can look at the cells and do some research). Will do this in 3 months. He did not think the CLL needed anymore RTX, but is having my Weg doctor make final decision since he thinks I had a flare. Thank you for your support yesterday - I have a lot to be thankful for, just needed to vent a little.

Page 1 of 2 12 LastLast

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
  •