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Wednesday, November, 25, 2009
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Campath Study...anyone doing it?

Terri the klutz
Terri the klutz
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Terri the klutz is Terri the Klutz
Mom of 2 boys, one is medically fragile,ive had rrms since 2002

Terri the klutz

Thursday, November 20, 2008
View All of Terri the klutz's Posts
Hi Group, I have the rare option of enrolling into the leukemia med study,"Campath".   2 people have died thus far from it, and I was hoping to chat with someone who has tried this therapy.   2 people also died from PML/tysabri. I was on that ,too.   Any input is appreciated. &...
  1. Untitled Comment
    Lisa Emrich
    Thursday, November 20, 2008 at 04:29 PM

    Hi Klutz (that sounds so weird to say),

     

    Welcome.  I don't know if there are other folks here who have used Campath.  But I'd certainly be interested in following your experience with it.

     

    I am aware that one patient died during previous trials.  But in researching it, I believe that the patient who died was discovered to be on the other arm of the trial, meaning that he/she was using Rebif, not Campath.

     

    The potential side-effects are powerful as was reported recently. I wrote about that here.  It sounds like they've discovered what to monitor for so that patients can receive swift treatment if need be for ITP or thyroid disease.

     

    Looking forward to more soon.

    Lisa

    Reply
    Campath
    Terri the klutz
    Thursday, November 20, 2008 at 05:32 PM

    Hi Lisa,

    I am Terri- the klutz. I should change that....

     

    That is interesting that the pt was on Rebif.....

     

    Ive been on that too.

     

    Thanks for the input, I shall do some more research!

     

    Terri

    Reply
    re: Untitled Comment
    Dave
    Saturday, May 09, 2009 at 05:10 PM

    I did my week the first week of March....so far so good

    Reply
  2. I did it!
    scattyd
    Monday, April 20, 2009 at 02:02 PM

    WowSurprised!

    At least the Trial IV's are finished (In fact it finished 2 Friday's ago), but Blimey that was hard work.

    The IV's were the least of my worries (although the allergic reaction to the Trial drug was quite something - After 3 hours each day I came up with an 'impressive' allergic reaction - head to toe red, itchy, sore Hives - it looked like I'd been attacked by several swarms of bees!! But an IV of some anti-allergic dealt with it very quickly)

    Since the IV's finished, I've been on anti-biotics for a sinus & ear infection, followed by a mouth infection from the anti-biotics.  Energy levels have been at an all time low - sleep is the favoured activity at the moment!

    BUT since the start of last weekend I have started to feel a lot better &

    AMAZINGLY I feel quite an improvement in some things.  Most noticibily, my left leg, which has been an unbalanced, uncoordinated thing attached to my body, that hasn't really wanted to do what I've wanted it to do, has become reattachedSmile.

    My logic on everything is 'I would if I could'

    As far as the trial participation is concerned 'I could so I did.

    I have found it hard work, & who knows what the rest of the year will bring?

    But if I were you, & if your lifestyle permits taking some time to recuperate, I would go for it

    Samantha (ScattyD)

    Reply
    re: I did it!
    Terri the klutz
    Monday, April 20, 2009 at 03:53 PM

    Thank you for sharing this information. It is very helpful to hear how others on the study are doing.

    Best,

    Terri

    Reply
    re: re: I did it!
    Anonymous
    Thursday, April 23, 2009 at 03:18 PM

    I am also on the Alemtuzumab trial.  Had drug at the end of march.  Doing well, VERY little side effects.  Much better that 3 x weekly self-injections.  You are basically monitored every two weeks between the survey and the clinic visits so there is a great chance they will catch anything major before it becomes a problem.  Highly recommend it.

    Reply
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