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Thread: Trying Something New

  1. #21
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    Quote Originally Posted by KathyB View Post
    I've tried to upload the .ppt file from my computer, but don't think it worked. I'll keep trying!
    I have tried to do so in past but was never able to do so. I wonder if it can be done.

  2. #22
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    Thanks guys Is there a link to the ppt somewhere on the internet? Maybe as part of a conference presentation?

  3. #23
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    Quote Originally Posted by Sangye View Post
    I saw Dr Seo this week for a routine visit. After this round of rtx, it took me a whopping 9 weeks to bounce back, while it normally takes only 2 weeks. Also, it only seems to work for about 6-7 months, leaving me in increasingly awful shape as I try to make it to one year in-between treatments. (I don't have any other drug options and we've been trying to limit my exposure to rtx)

    Dr Seo changed the plan to do 1 rtx infusion every 4 months. He said a doc (John Niles at Boston Univ?) has been doing that with some patients and having success. He said the 4-month timing is completely arbitrary but it does work for some. We both felt it's worth trying since the 4 infusions knock me down so badly and it's a long year in-between. Maybe the Wegs dog will agree to sleep if he gets a short lullaby every 4 months?

    First one is in October. I'm not looking forward to getting rtx again so soon, but I can bounce back from just one infusion pretty quickly.
    Interesting Sangye, as it seems folks and their docs seem to be more willing to play both with dosing and scheduling as time marches on with RTX being used as an on going therapy. My own daughter reports feeling "gray" for up to a week or more after heavier dosing or a more prolonged schedule of RTX. (We are engaged on another thread with a member that sees the same local rheumy. Another of this docs patients is going med free for a while due to severe subsequent infections...several of which have nearly taken his life).

    If others that have been treated at any of the other major specialty centers have noticed any other novel dosing schedules (or even other drugs thrown in the mix) please keep those of us on the forum posted.

    Best regards to you Sangye!

    Jane, mom to Alison

  4. #24
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    Thanks Jane. I'm bargaining with Dr Seo to let me wait until November to do the first one. I just recovered from the June treatments-- not ready to go back in yet. Negotiations are going well. I think I owe him 2 goats and a bottle of ouzo.

  5. #25
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    In case you run out


  6. #26
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    Quote Originally Posted by RCOSSIO View Post
    In case you run out

    rotfl


    rottfl

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