What's going to happen next

This topic contains 3 replies, has 3 voices, and was last updated by  JustCathy 7 years, 6 months ago.

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  • #119488

    JustCathy
    Participant

    Hi
    Looking for some advice my husband has myeloma since 2011 and has had SCT transplant 2012. This week we got the latest blood results paraprotein levels (don’t know if I spelt that right) have risen from 6 to 12 in the last 3 months. What’s next for him is this result really bad news how long before he has to go on treatment again. He has lost the use of his kidneys and is on dialysis for a year now. Feeling down this week when he was just beginning to get used to living on dialysis. What’s next for us.

    Cathy

    #119542

    ellen
    Moderator

    Dear Cathy, I’m sorry that as yet no one has responded to your post. I hope you don’t mind me replying, my name is Ellen and I am one of the Myeloma Information Specialists at Myeloma UK.

    An increase in the paraprotein reading can be alarming and the concern is that it may indicate that the myeloma is becoming active again. That said, many haematologists wouldn’t necessarily rush into retreating anyone whose paraprotein had risen and most will not make any decisions based on the paraprotein level alone. What doctors look at is the trend over a period of time. Doctors will take other factors into account and a rise in the paraprotein may prompt them to order other investigations such as additional blood tests a bone marrow biopsy or new X-rays. They would also take into account how well the patient is feeling in general and if there were any new or increased symptoms, such as pain or fatigue.

    Any relapse would be managed on an individual basis taking into account previous treatments, the response and how well any treatment was tolerated. Generally in the UK patients at first relapse are offered treatment with the drug Velcade but there may be other options and this of course would depend on the individual situation.

    So to summarise:

    • Treatment may not begin again until there is evidence that the myeloma is beginning to cause problems in other areas such as the bones, the normal blood levels or the immune system.
    • Your husband’s haematologist may order further tests to determine if he is indeed relapsing.
    • Any relapse would be managed on an individual basis

    I hope this has been of some help, but if you have any further questions, or would like to talk things through, please feel free to call the Myeloma Infoline on 0800 980 3332 – I or one of my colleagues can clarify things for you further. Alternately you can email directly to askthenurse@myeloma.org.uk

    With best wishes
    Ellen

    #119639

    Dorothy
    Participant

    Not an expert just a relapsed patient. My paraproteins began to rise slowly but took well over year or so to get to the point when extra investigations were needed. I am now on Velcade treatment regimen after X-ray, MRI, ultrasound, bloods etc and consultations. It is hard to give any advice as every patient is different and consultants have their own regimen as do the hospitals etc. I make lots of notes and write all questions to ask at my clinic appointment…remember there are no stupid questions and you should ask ANYTHING no matter how daft it may seem. I don’t know where you are but my team have specialist nurses for every patient and family.

    I am so sorry you are having some real concerns, living with Myeloma is not easy, harder for partners we feel as my husband gets frustrated too at times.

    Hope the nurse’s advice is helpful, you can get some booklets from Myeloma UK too.
    Praying that you and your husband are able to realx a little and take your concerns/questions to your team.

    Bestest

    Dorothy

    #119640

    JustCathy
    Participant

    Thank you so much Ellen and Dorothy for answering, That makes me feel a lot better, my husband went to his last appointment on his own so didn’t ask enough questions when they told him his count was rising, I will be there next time to see where we go from here. Dorothy I know its different for every patient so let’s hoping he is like yourself and have a while before treatment. At the minute he and I are in full time work and working around dialysis 3 days a week which Ivan does at home. Very proud of my husband and how he has coped with myeloma Sct and losing his kidneys he will retire next summer and I’ll keep on working life is what we make it and I’m glad I can come on here and chat.

    I’m now organising a Christmas Day dip in the sea with family and friends for myeloma research it’s the least we can do for Ivan. We live in Northern Ireland and I have got about 25 family and friends getting together in a beach area called lisfannon in Donegal not far from my home in Derry. Should be good craic We have done the Christmas Day swim before for a family member who dies at 19 from a heart disease so know what I’m in for. And this time we are doing it for myeloma research and Ivan. It is hard being the wife or husband feel useless sometimes but thought better to something positive and raise funds for the research.

    Thanks again for your support Cathy

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