Bi Specific antibody

This topic contains 5 replies, has 2 voices, and was last updated by  goffy1957 1 month ago.

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  • #152875

    goffy1957
    Participant

    Hi folks
    Was just trying to get an insight into this treatment
    Obviously trying not to use Dr Google USA
    but personal experiences in the uk
    Short story
    Diagnosed April 25 treated with Dara/velcade and dex for seven months light chains dropped dramatically from 28000 to a few hundred. Then it stopped working.
    Started on Belamtumab again numbers dropped to 19 !!! Then it stopped working .
    Now told the Haemotolgist wants to try bi specifics? Not sure which one of the 3
    My question is any of you good folks out there been on this and what’s the regime and side affects ? I know we’re all so different and won’t have the same problems but having read the pamphlets and myeloma sites I’m pretty terrified to even go to the consultation next week
    Hope some one can help
    David
    BTW IM 74 and fairly fit at the moment
    Thanks

    #152876

    rabbit
    Participant

    Hi David,

    My sympathies: you have been through a lot of treatment and now face more.

    I have not had bispecifics but I am geeky enough to read a lot 😀.

    Belantamab gets the immune system to attack the BCMA antigen. Since that has stopped working, that probably means that your myeloma cells have adapted their BCMAs (similar to bacteria getting resistant to an antibiotic). That would make the bispecifics teclistamab and elranatamab less effective.

    The other approved bispecific is talquetamab, which targets the GPRC5D antigen instead. It’s my best guess that that is what your consultant is thinking about.

    The regime for bispecifics is that you would be given a few “step up” doses over a couple of weeks to see how you get on and to let your immune system respond steadily. Then you would get regular doses, typically weekly for some months then less frequently.

    Side effects: Warning you may not want to read the rest of this!
    Unfortunately, people also have GPRC5D antigen in cells on the tongue, skin and nails, so a metallic taste and skin rashes are common, (as well as changes to nails such as brittleness).
    Then there is a lot of infection risk.
    There is cytokine release syndrome, where you body attacks myeloma cells too enthusiastically and your body struggles to cope (that’s why the step up is important – the attack is more gentle on your body).
    Then there is neurological toxicity. Less common but can include confusion and brain fog.
    Blood counts can become low, although transfusions can help with that.

    Regards
    Rabbit

    • This reply was modified 1 month ago by  rabbit.
    #152884

    goffy1957
    Participant

    Rabbit many thanks
    That’s my concern ! The side affects,but in saying that the alternative of not being given an option isn’t worth considering
    Although my light chains have increased to 1000 again I feel perfectly fit, though I know that won’t last !
    Not sure how quickly they multiply ?
    Any idea of the data regarding percentages of patients having serious CRS and neurotoxicity ??
    I can’t find any
    Regards
    David

    #152885

    rabbit
    Participant

    Hi David,

    As an ex-scientist, it is relatively easy for me to find data (I generally know where to look) but I also know that that isn’t always the point.

    Two issues come to mind in terms of bispecific side effect data and its relevance:
    – As you said yourself, there are 3 bispecifics. Although I have stated above why I think that the relevant one for you is Talquetamab, your consultant may think differently.
    – The clinical trials were done a few years ago. Since then, things have moved on for the better, so the data on side effects is more adverse than what you would face. The “step up” that is now being done was developed to reduce the probability and severity of cytokine release syndrome (CRS), for example. Tocilizumab, a drug that blocks inflammatory signaling and can rapidly control CRS symptoms, is now routinely given. Also it happened that some trials were done when Covid 19 was at its worst, so there were a lot of severe infections: hopefully you are vaccinated, and Covid has subsequently become much milder anyway.

    • This reply was modified 1 month ago by  rabbit.
    • This reply was modified 1 month ago by  rabbit.
    #152888

    rabbit
    Participant

    Hi David,

    One extra thing to mention and then I will shut up 😀.

    I don’t know if this will provide you with any reassurance…

    I have done a lot of reading up on treatments and clinical trials of them. Although I am currently in remission, I have pondered my thoughts about my next line of treatment: I am currently hoping to persuade my consultant when the time comes to give me a bispecific antibody treatment.

    Regards
    Rabbit

    #152889

    goffy1957
    Participant

    Rabbit
    Please accept my thanks
    I really appreciate your advice and knowledge
    It’s as lonely journey full of anxiety and waiting for the unknown
    David

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