Advice from anyone who has been on Ninlaro please?

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This topic contains 6 replies, has 3 voices, and was last updated by  ren 1 year, 11 months ago.

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  • #143282

    ren
    Participant

    Hi was diagnosed with Myeloma just over 12 months ago, unfortunately nothing seems to be working. Started off being allergic to a lot of the treatment and trying to get my levels down has been a nightmare. It has been a very hard and lonely 12 months wish I had realised about this site sooner. I have now been put on Ninlsro along side Revlimide (lenalidomide) and Dexamethson. Was just wondering if anyone else has been on this combination and what success have they had.

    #143283

    tony642
    Moderator

    Hi Ren,

    I am one of the forum volunteers and I also have Myeloma. Yes it is unfortunate that you did now know about this site earlier, I know a lot of people have got some useful information from it, and also found it useful to know that you are not the only one living with the disease even though sometimes it feels like it is.

    I have not had the combination of drugs that you describe so I cannot give you first hand experience, but I can say that there are many different drugs they can try, and new ones coming out all of the time. Have you discussed your concerns wit your medical team, particularly your haematology consultant and specialist Nurse? I am sure they would be more than happy to discuss it with you and maybe look at alternatives.

    Just because one course of treatment has not worked, it doesn`t man that nothing will. A lot of us have been here a long time after diagnosis, so it is not all doom and gloom. Keep your chin up, stay positive, and believe in hope.

    Let us know how you get on, and if you have any other concerns you want to share, please let us know.

    Regards, Tony

    #143286

    ren
    Participant

    Hi Tony thank you for your reply. I realise that there seems to be a lot of different combinations that are tried, my team just don’t seem to take the time to discuss things with me they just say right we will try these even to the point of telling me how lucky I am and telling me the price of the new tablet. I am getting very disheartened as the chance of a cell transplant seems to diminishing as I’m now 68 and feel that if my protein levels don’t come down soon I will be classed as to old. Just hoping I get some success soon.

    #143291

    kh0305
    Moderator

    Hi ren,

    Sorry to hear you have had such a rubbish 12 months. Im another of the volunteers on the forum and my dad was diagnosed with myeloma back in 2013. He had a very successful treatment the first time round but when he went into relapse in 2020 it has been a bit more of a struggle. He is now on the same combination as you (fourth cycle) after the previous one failed to work and, though it is early days, his last consultation showed positive reductions in his light chains and paraproteins and he has another consult in early June where we are hoping the pattern will continue. Unfortunately it is difficult to predict as MM seems to be such an individual disease and everybody responds differently to the meds.

    I hope that you also have success with this combination as we were worried after dad didn’t respond as he should to his previous treatment which has been successful for so many so can understand your concerns. How long have you been on this combination? Dads consultant said it would be from third cycle when ‘real’ impact of the meds would be seen (he had also had a period of no drugs following the cessation of his dvd treatment). Hope you have some positive results soon x

    #143297

    ren
    Participant

    Hi thank you for your reply, not sure how old your dad is but I’m a 68 year old female, not to sure how to add a photo, I have only had my first round of 3 weeks and now on my second week off so will start my next round of 3 weeks on Monday. Had my bloods done yesterday so will get some idea in about 10 days if it has done anything though it might be a bit to soon to tell yet. Don’t mind me asking but what are light chins?that’s not something that has ever been mentioned to me so not sure what they are. Hope your dad has has some success.

    Regards Sandra

    #143299

    kh0305
    Moderator

    Hi Sandra,

    To add a photo, if you hover over your username in the top right corner it should bring up a menu with edit profile option for you to click on. In the profile tab of that there is an option to edit profile photo so if you wish you can upload a photo but many choose not to, so don’t worry if you don’t want to!

    My dad is now 72 and was 62 when first diagnosed. It may be a little soon from the next consult based on what we were told to see any ‘real’ results but it will hopefully give you an indication.

    The first time round all that was spoken about with us as markers was paraproteins and it was only when dad relapsed we started hearing the term light chains, so you are not alone. It is essentially another marker to monitor how MM is progressing. There is a really useful article on the News & Stories blog > ‘ask the nurse’ section of the site that explains paraproteins and light chains much better than I probably can:
    “Antibodies are made up of two parts, heavy chains and light chains. When making antibodies, plasma cells normally make more light chains than required. These lights chains enter the blood as free light chains.
    The light chains in antibodies come in two types – kappa (κ) and lambda (λ).

    In people without myeloma, light chains are present in the blood, but the balance between kappa and lambda types (called the kappa to lambda ratio or free light chain ratio) will be fairly even.

    In myeloma, the myeloma cells produce either kappa or lambda light chains only, so the level of that type will be higher, and the kappa to lambda ratio will change.

    An abnormal ratio can indicate active myeloma and is considered to be as important as the kappa and lambda levels for diagnosing and monitoring myeloma.

    Therefore, as myeloma cells produce the paraprotein they also produce excess amounts of one type of light chain.”
    Full blog article: https://www.myeloma.org.uk/news/ask-the-nurse-paraproteins-and-free-light-chains/

    Hope this helps x

    #143305

    ren
    Participant

    Hi, thanks you for giving me some insight into what might be infront of me, a lot of things to try and understand. It’s heartening to see how long people have been surviving with myloma I think when I was first diagnosed all you seem to focus on is the word terminal, was not given any kind of prognosis was just told that it would shorten my life., it gives me a bit more hope.
    Thank you again
    Regards Sandra

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