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Thread: Rituximab Round Two

  1. #11
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    Thanks, everyone. I'm still trying to get it scheduled.

    I'm amazed at how much I've changed my thinking. When I first got Wegs the idea of even taking Lasix was a huge thing, much less chemo, pred, etc.... I fought everything, knowing what it does to the body. I never could have imagined that almost 4 yrs later I'd be asking to have a monoclonal antibody that wipes out all your B cells for months injected EARLY! Everything changes, even minds.

  2. #12
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    What was it like for you, Sangye, changing your mind like that? I can't tell you how often people ask me whether or not there isn't a holistic treatment for WG, or maybe with just a few changes in your lifestyle/diet/stress levels -- wouldn't your immune system just right itself??? Or people say how horrible it is for you to put chemo into your body. And I'm certainly not someone is would have been surrounded by holistic practioners, the way that you are/were, but for a lot of people now medicine=bad. It must have been quite a challenge.

  3. #13
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    Jan, whenever anyone ask me or gives me holistic "tips" I let them know about Sangye and her near death experience by trying to "heal herself" with natural medicines. I also let them know that this is one of those unlucky diseases that boosting immune system doesn't help just the reverse and unfortunately natural medicinces are all about boosting and not suppressing. Sangye will correct me if I'm wrong LOL
    Jolanta

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    By the way, a day doesn't go by when I don't get a "have you tried this..." even from people (and family) that have known about my disease for a long time.
    Jolanta

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    Very frustrating! I don't get that from my family, but especially when it comes to the immunosuppressants (chemo) that we have to be on, it seems as though people are like..."but you don't have cancer, why such strong drugs?!"

  6. #16
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    I simply reply that its worse than cancer because it is a life long disease and I will be on chemotherapy for the rest of my life. That has their jaws drop
    Jolanta

  7. #17
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    Cancer seems to get get all the publicity doesn't it? Even our government rates it above other diseases - cancer patients in the UK get free prescriptions, but us with lesser disease have to pay £100 / year (yes, I know that it still sounds like a bargain if you have to rely on insurance!). The other day someone was running an official survey at my local hospital about the parking facilities and one of the questions was, "Should cancer patients get free parking?" Why should they?

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    I tell people Wegs is worse than cancer. Here's my list of why :
    1) There's no hope of a cure
    2) There are no statistics for a given drug treatment (eg, Drug X given for ___ months is ___% likely to get you into remission)
    3) There are no real choices for meds
    4) There is no holistic treatment for Wegs whatsoever
    5) You cannot take supplements freely on your own
    6) You cannot get acupuncture, chiropractic or many other holistic treatments without caution
    7) Only a handful of docs in the world know how to treat it
    8) There are very few support groups available
    9) You might never meet another Weggie
    10) There really is no such thing as a prognosis
    11) You can tell anyone you have cancer and they immediately understand a lot about it

    Cancer is awful. Wegs is awful. We all deserve to park for free.

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    Jan, it's been a huge deal for me to enter Medical World. I didn't live there before. Even though the holistic docs who know me support the medical treatment, it's quite painful for all of us. I'm not able to restore/rebuild my body like I could with any other disease.

    Anytime I meet someone new in holistic circles, I have to explain it all over again. I can hear the judgment in their voices, like I'm doing something stupid by taking chemo, etc.... Those who don't judge still have a sense of disappointment and frustration. They fight it. So did I. I can't fault them for it. The drugs we take are horrific, even if they seem routine to us.

    The medical docs don't understand me as a holistic physician. My holistic peers don't understand me as a medical patient. It's incredibly isolating and brings me to tears quite often.

  10. #20
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    We don't want you in tears Sangye, rather in cheers. So when you get the appt for next week, post it and all of us will at the time of the treatment send our energy to you. It is the least we can do.
    Dale

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