Treatment feedback

This topic contains 6 replies, has 5 voices, and was last updated by  kh0305 2 years, 3 months ago.

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  • #141388

    millie12
    Participant

    Hi,

    I’m not new to the site but haven’t posted anything for a while as I’ve been in remission for 4 years now after first line treatment. My PP level have been steadily increasing and I have now been told I need to start a second line treatment regime. I have been given the option of the oral treatment which is Lalidomite and Dexemethazone. Or the new Darzalex treatment route. I am swaying towards the oral treatment route as I had such a bad time at the end of my first treatment due to the velcade that would be involved again. I was constantly sick for a whole year after first line treatment so very wary of starting the new Darzalex regime.

    Any advice would help, has anyone had a good response with the oral medication? And how long has anyone been on it for and the side effects I can expect.

    #141389

    mulberry
    Participant

    Hi millie12
    I can’t give you first hand experience but lots of people using myeloma Facebook groups seem to be doing very well with daratumumab, velcade and dex as a second line treatment. I’d personally not want to miss out the opportunity to have daratumumab at some stage. It is a monoclonal antibody which attaches to a specific protein on the surface of myeloma cells enabling your immune system to recognise the cell as myeloma and to get rid of it. This is a different mechanism to the drugs you (& I ) had before. I’d check out if you don’t have it as second line whether you will miss out altogether. Lenalidomide on the other hand, seems to be given at a variety of different stages, so if you can keep one of the drugs back for use later that would come into my decision making. The biggest side effect problem with DVD seems to be the potential for a severe reaction during or after the first infusion which is why it is done in hospital. Like every myeloma drug, there are potential serious side effects with DVD, but some people appear to be living very well with it, and their myeloma levels quickly responded to the treatment.

    #141391

    millie12
    Participant

    Thanks for your feedback I’ll certainly be asking that question on Monday whether or not Daratumumab will be offered to me further down the line.

    #141394

    regine
    Participant

    Hello Millie 12,
    I have been on Lenalidomide and Dexamethasone since last October and would highly recommend it. It is my first treatment, so I don’t have any other experience, but apart from slight constipation and one night’s sleeping difficulties a week I can lead a normal life and just go for a blood test every four weeks.
    You obviously need to weigh up the different pros and cons, and I wish you all the best for your future treatment(s).
    regine

    #141395

    millie12
    Participant

    Thank you that’s good to know. It’s just a thought to go through hospital treatment again that’s why I was thinking about the tablets.

    #146752

    bear
    Participant

    Forum moderator…someone has posted junk again, obviously thinks we are all Muppets here falling for quack treatments.

    #146769

    kh0305
    Moderator

    Thanks bear – Spam removed

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