Daratumumab

This topic contains 4 replies, has 2 voices, and was last updated by  dbrr 6 years, 9 months ago.

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  • #133779

    Helen
    Participant

    Hi all
    I don’t know how many of you out there are on Daratumumab but I’d like to know what I should be feeling like- do I do as much as I can or should I just do what I feel up to and not push myself?
    And – side effects- I’m getting them 4 days after the infusion- all the named ones but horrible
    Love helen

    #137102

    dbrr
    Participant

    Hi, Helen,

    Are you feeling better after all these months?  Do you feel that the treatment has been worth the horrible side effects?  What a shame that so many of these treatments make people who already feel sick, sicker.  Wishing you well.

    #137159

    dbrr
    Participant

    My first Daratumumab treatment, nine hours long, was not at all what I had feared it might be.  Before administering the drug itself, I was bombarded with drugs which included steroids and Benadryl, enough Benadryl that I was able to spend much of the day sleeping, which suited me just fine.  I experienced very little in terms of side effects, maybe a tiny bit of shortness of breath, and I was a bit wobbly and ready, after the adventure, for a long night’s sleep.  The next day, perhaps because of the steroids, I had more energy than I have had in a long time.  Unfortunately the following day I was back to my usual exhausted self.

    Having dreaded this treatment, it was a relief to find it so innocuous and so unlike any chemotherapy I have experienced in the past.  I guess it really isn’t chemo, in that it is not a poison, but I do not understand the mechanism.  Next Thursday it will again take 9 hours, but subsequent treatments might go more quickly, which would be nice.

    I just thought I’d write in case others have as much apprehension as had plagued me.  It might very well not be as bad as you had expected.  Quite a pleasant surprise to find so little to complain about.  In a month or so, we will find out if it is working.

    #137160

    Helen
    Participant

    Hi Michael
    I’m really glad you are doing ok with Daratumumab, sadly I had to come off it after 3 months as my disease went wild and I’m now on thalidomide- which fortunately is working.
    You are right to put your experience of it on here, it can be very helpful to know others have been there too.
    Love Helen

    #137163

    dbrr
    Participant

    I am sorry to hear that this unpronounceable infusion didn’t help you, Helen.  I have not taken thalidomide, but I hated lenalomide.  I even felt grateful when I was told that Revlimid had stopped working for me.  I had been chemo-free for two months, but in that length of time the light chain numbers behaved very badly, and I was told if I wanted to have a decent summer, or even a summer at all, that I had to get with the program and that daratumumab was the only option left me.

    I hope you are finding the thalidomide helpful with only minimal side effects.  I don’t think anyone gets away with no side effects.  Wishing you lots of luck and all the best.

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