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Thread: 2 vs. 4 RTX Infusions - Thoughts?

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    Default 2 vs. 4 RTX Infusions - Thoughts?

    Well I finished my CTX last month and now am going to do RTX because I still have symptoms and we want to get it fully into remission. Right now the plan is to do 4 weekly infusions for 4 weeks, but due to work I would like to try the 2 bi-weekly infusions twice. Any thoughts on this?

    Thanks!

    Anna

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    I would personally go for the 4 infusions because I have found that people do better on 4 vs 2.
    Phil Berggren, dx 2003

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    I'm doing the 2 infusions, it works great for me. Never tried 4 though, so might be that works as well.

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    How are you feeling today Elena?
    Phil Berggren, dx 2003

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    I'm feeling good, still got that stupid rash though. Thanks for asking.
    Going to see the doc tomorrow and probably take some blood tests then or on wednesday. Hopefully it's nothing to worry about..

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    Good to hear. Hopefully the doc will have an answer for you.
    Phil Berggren, dx 2003

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    In my case I had the 2 infusion treatment in the first instance - it worked a like a dream. I have been advised that should / if we need to repeat the treatment the 4 infusion method will be used. I am not sure why the change but I get the impression that over here the 4 infusion method is now the preferred treatment.

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    Quote Originally Posted by pwc51 View Post
    In my case I had the 2 infusion treatment in the first instance - it worked a like a dream. I have been advised that should / if we need to repeat the treatment the 4 infusion method will be used. I am not sure why the change but I get the impression that over here the 4 infusion method is now the preferred treatment.
    Peter and I are treated by the same doctor at the same hospital and I know that is how our doctor wanted to treat me. Today I have learnt that the pen pushers/accountants have decided that my treaytment should be by the two infusion method.

    Jim
    You give but little when you give of your possessions. It is when you give of yourself that you truly give. Kahil Gibran

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    Anna, this is not something you should be deciding on your own (or with input from the group). Your doctor should be deciding this based on research and your unique case.

    In general, the 2- infusion treatment has become the preferred protocol for people who aren't having severe disease activity. However, if you're quite overweight and have moderate to severe disease activity you may need to do the 4 infusion protocol because you will get more rtx.

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    Sangye I may respectfully disagree with you on this. I think Anna is right to question , be involved and make the decision of how many infusions to treat her condition. There are several elements of philosophy that cause me to say this.

    --Purely from personal experience I must say that when there has been any room for question as to the course of action for my treatment I have learned to always go with my own sense, my own idea of what would be best. Is this because I am always right? No. In these open situations am I more often right than the doc? Maybe - I think so.

    Most importantly, in those cases where it later becomes apparent that we should have maybe tried something else I have always been more at peace with having made the decision myself than simply letting myself be passive and do whatever the doc wanted. Simply put, I prefer to suffer my own mistakes (and trust me, I've got some big ones) than to suffer the mistakes of others. NOTHING feels worse than to follow the doctors advice, have things get worse , and think " I KNEW we should have done B instead of A".

    Let me be clear that I am talking about a specific scenario where more than one choice could be the best one. (Which unfortunatly covers a high percentage of WG treatment)
    Also I am talking about gathering information and going with my own gut. There have been cases where I have no extra info, and no particular gut , in which case I go with what the doc wants to do - still this is my choice and I don't blame him/her if things go south.

    -- Also, I myself am filled with questions about how to decide the frequency and dosage of Rituxan. As far as I know there is not a definative study or article that lays it all out. As near as I can determine the docs are still trying to figure this out, much like the early days of Cytoxan
    I think they are trying to figure out how LITTLE is safe. I emboldonize (I like making up words) LITTLE because usually we think about drugs in terms of how MUCH is safe. In this case, as we know all too well, the disease is so darned dangerous that we go all out nuclear with treatment and try and figure out later if we could have done less and still gotten a good result.

    I was treated with Cytoxan over thirty years ago and back then LOTS of Cytoxan was used. Today, it has been fine tuned to much less (perhaps to much less, but thats another topic)

    When Rituxan was first used in this country 4 infusions was THE protocol. It was the protocol I began with.
    When I next went for treatment my doc scheduled me for 2 infusions. I asked 'Whats up with the 2?" . I was told they were getting good results with using 2 instead of 4. He referred to the 4 as "British protocol" and 2 as "American protocol".

    I told him I was very glad to hear that now please schedule me for 4. He respected my wish and signed me up for 4.
    My condition did not improve signficantly but at least I knew it was not from experimenting with half dosages.
    In terms of 'medical time' they have very little experience with any Rituxan dosage protocol. This leaves the question much more open to guess work- at least as far as I can tell.

    To throw another wrench into this question let me add that treatment has now evolved into giving 6 month 'booster' shots of Rituxan because of the high rate of relapse beyond that time frame. The last 'booster' I had my doc only gave me ONE infusion.
    I ask "Whats up with that?" My doc tells me he knows a guy in England who has been treating his patients this way and getting good results. "Great. Whats his name?"

    Doc says he can't remember his name. Great, that means I can't look for information using his name. I looked for information anyway - in vain.
    My next visit I trying and pin him down even more. He assures me a significant number of patients have been treated for a number of years this way with good results- but still won't tell me who is using this protocol.

    In this case I know I can insist upon 2 treatments if I want. I'll switch docs if I have to , I will not do treatment I don't believe in. What I also know is the reason why they would be trying to scale back treatments. NEW drugs like Rituxan are more dangerous than old drugs. Caution of over treatment should be beyond the norm. The drug has very little track record yet.

    WG is dangerous too, so its the good ole rock and a hard place where we WG people spend our summer vacations.
    I decide in this case to go with what the doc wants to do. I have some track record with him and I think he has good instincts.
    I know he cannot explain every decision to my satisfaction because some of this is based on instinct. Docs are loath to use the word or even allude to it and I understand that.

    So , I have been long winded on this. One reason is that this is an evolving subject in my mind and I would love to hear what others have been able to learn. As far as I know there is not much , or anything , written about this cutting edge of refining Rituxan treatment.
    Our questions and input as patients are part of how these questions will get answered. Our silence makes us into little more than lab rats. (rats generally don't have insurance so that is why I hedged the statement a bit)

    As a foot note- you can tell I am feeling a bit frisky this morning. This - five months after my single booster shot of Rituxan. I am scheduled for another next month. It has been very slow going , very slow to call it improvement and yet I must say I am improved. I had no dramatic improvement when I got my 4 infusions so what am I to think?

    I wish I was privy to the discussions doctors are having on this subject.

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