Lenalidomide maintenance 10 mg

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This topic contains 31 replies, has 7 voices, and was last updated by  mulberry 3 years, 2 months ago.

Viewing 15 posts - 16 through 30 (of 32 total)
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  • #141658

    redlinehigh
    Participant

    Hi There, thats great news to hear, can I ask, did you start off on 10 mg from the offset and was that what your consultant decided?
    Thanks

    #141659

    myeloma2016
    Participant

    taking maintenance medication was what my oncologist decided. I started taking lenalidomide 2 months and half after SCT.

    #141661

    redlinehigh
    Participant

    Have you had many side effects from the lenalidomide ?

    #141662

    myeloma2016
    Participant

    Hi redlinehigh
    Im on the second cycle of lenalidomide maintenance. So far i did not notice any unpleasant side effects.

    Stay safe

    #141663

    redlinehigh
    Participant

    OK thats great to know thanks! How long
    Is what you call a cycle?

    #141664

    yorkshirelad
    Participant

    Good morning All, I know that many are frustrated by the current position that (outside Scotland) Lenalidamide is not available on the NHS as maintenance after SCT. Everyone should know that you can buy Natco Lenalidamide by post from India from a variety of sellers.

    Order online, sent to you by Post.
    No prescription is required.
    No need to travel to India.
    It is perfectly legal.

    I have now been on Lenalidamide for 15 months, and it has cost me £670 for the last 12 months including shipping costs. (Plus £30 odd in bank transfer fees). The biggest risk IMV is that the vendor takes the money and never sends the goods. Well worth the risk.

    My consultant knows about this, and considers that it is a good move (although they are not allowed to promote my sourcing it from India). One consultant confirmed that the Natco lenalid is identical to Revlimid as far as they understand, (which is the case with all generic drugs) and the only reason not to take it would be the risk of side-effects which go with taking Revlamid/Lenalid. That is being monitored anyway as part of regular checks/bloods.

    This is a drug which is simple to make, has been on the market for over 20 years now, and there is no reason why we should not all be taking it in the generic form available from India. (I cannot comment on other version from Dr Reddys – but both Natco and Dr Reddys are massive pharmas valued in the billions).

    #141667

    yorkshirelad
    Participant

    I should add that there are others on the forum who have used the version from Dr Reddys without problems as well.

    #141668

    myeloma2016
    Participant

    Information on lenalidomide are available online. Each cycle begins with taking 21 day medication and one week rest
    Good luck

    #141671

    mulberry
    Participant

    I don’t think it’s the myeloma or treatment that is directly affecting my sleep, well spotted a response at 2am!

    #141700

    finn
    Participant

    Hi there
    I was first prescribed 25 mg lenalidomide maintenance but that caused too many side effects and it was finally lowered to 10 mg, 21 days on, 7 days off. I also take low dose of aspirin, and I take these medication in the evening before bed. They sometimes disrupt my sleep which is annoying but not a real problem, whereas stomach problems have been a horrible side effect. Lately I have taken colestyramine for that and it has basically solved the problem. Now nearly 3 years on this treatment and living life to the full.

    #141702

    redlinehigh
    Participant

    Hi Finn,
    Thanks very much for your detailed account of your life on lenlidamide!
    Interesting the you had side effects as all I hear is that patients don’t get any!
    Glad you are living life to the full, as its reassuring that this is possible taking this drug!
    Happy new year to everyone!!

    #141707

    rachelj
    Participant

    I had a stem cell transplant 7 weeks ago and am about to go on maintenance chemo. Prior to my transplant I was on lenalidomide (with ixamobib and dex) for 18 months. And other types of chemo before that.
    I have been told my maintenance lenalidomide will be 3 weeks on and one off as all my chemo has been. I am waiting to hear what dose. Previously I was on 15mg (and 20mg before that).
    One of the main effects was on my immune system (neutrophils and white blood cells) which is a key problem with lenalidomide. Hence going on a lower dose.
    Because of Covid NICE have apparently relaxed some of the timings about receiving lenalidomide so you should check with your consultant if this impacts you (in England).
    I always took lenalidomide about 6pm with no ill effects.
    Good luck
    Rachel

    #141708

    redlinehigh
    Participant

    Hi Rachel,
    Thanks for your email, nice to hear your story and glad you are getting sorted after your stem cell transplant!
    Can I ask why you take your meds at 9pm, is this a recommended time??
    Many thanks

    #141709

    rachelj
    Participant

    When I was first on oral chemo I was told to take them at my evening meal so 6pm roughly. But always took steroids (dex) first thing in the morning.
    R.

    #141710

    redlinehigh
    Participant

    Thanks for your help, jut trying to get my head around it all!

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