Help please – new to this and trying to work out what is happening.

This topic contains 5 replies, has 3 voices, and was last updated by  sdfsjdkl 11 months, 3 weeks ago.

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  • #148428

    sdfsjdkl
    Participant

    Hello,
    I’m joining this forum on behalf of my Dad. He’s been having issues for a few months now with fatigue, joint pains and muscle weakness which seemed very out of character. He’s always been very active and it seemed to come on suddenly. He got a very swollen knee and lower leg, but all blood tests looked normal, it was a real conundrum.
    As he is 77, it felt like the GP wasn’t too interested which was disappointing. We are fortunate that we were able to pay for a private referral to a rheumatologist who said the cause might be something called “Polymyalgia rheumatica” and put him on steroids which seemed to magically instantly make his symptoms disappear. He did however also send him for additional tests, including blood tests and a chest x ray. The blood tests came back last week and showed paraproteins at level 5 (sorry I don’t know the technical terms) and today we’ve learned that light chains are slightly raised. However, calcium levels and everything else are normal.
    We have flown into a panic and been googling (which I’ve just read in a previous post here is a terrible idea!) but we are very anxious and wondering what to do next. The GP said they will refer to haematology but that we may get knocked back from that? I don’t understand why?
    This all looks to me like myeloma from what I’ve read but wondering if anyone can advise on how bad the situation is and whether or not we need to push for referrals or any additional testing? I feel it must be good to get things moving as quickly as possible for the best outcome? It feels to us like my dad has been written off because of his age, but he is full of life and energy usually and this feels so cruel.
    thanks in advance for any advice,
    Rachel

    #148431

    sdfsjdkl
    Participant

    Just seen that light chain numbers are 21.5. I am worried as it says “above high reference limit”.

    The x ray also shows degeneration in the shoulder and thoracic spine but I don’t know whether that is just consistent with his age or whether it’s to do with this?

    #148436

    mulberry
    Participant

    Welcome to this forum.
    Firstly try not to panic.
    It’s positive that your father has been referred to haematology, who will advise the GP even if they assess that your father doesn’t need to be seen by them at present. GPs only see one or two cases of myeloma in their careers on average, so they are not experts in the condition and associated conditions.
    Paraproteins are by definition abnormal, they are cloned cells, which ‘shouldn’t be there’. However a significant percentage of the population live with a low level of paraproteins which cause no obvious ill effects. This is called MGUS, or Monoclonal Gammopathy of Unknown Significance. A diagnosis of MGUS can be any level of paraprotein under 30g/l, although there are a few myeloma patients who have had some damage at levels under 30g/l, which is why cases need to be discussed with expert haematology consultant. I suspect your father has been told that he has a level of 5g/l, so at what is actually a pretty low level that is very unlikely to be causing your father physical damage. (BTW at diagnosis Light Chains can be in the 1000s,even 10s of 1000s, so a marginally raised level isn’t worrying from a haematological point of view)
    Haematology will review your father’s results, if they think there is any chance of him having active (or Smoldering , a half way stage)Myeloma they will want to see him to give him a whole range of tests. If they recognise his results as indicating MGUS then they are likely to ask his GP to retest him every few months to see whether these results are stable over time.
    If they don’t ask to see your father it definitely won’t be because they have written him off. Sometimes myeloma patients are acutely ill, very close to death at diagnosis, and they are definitely not written off!
    I hope this helps
    Jane

    #148438

    sdfsjdkl
    Participant

    Dear Jane
    Thank you SO much for your very calming and informative reply and I’m sorry I didn’t see it before now – I thought i would be notified if I got a reply for some reason.
    I’m reassured by your message so thank you very much and I was very much in a panic initially. I am feeling a little calmer now. We have had confirmation that Dad has a Haematology appointment over the phone with the team at the Lister hospital on 4th Dec so we will see what they have to say. It still feels a way away to me, but I’m sure the time will pass quickly and I am extremely grateful to you for your reassuring words.
    I think my expectations around feeling written off have been coloured by my father-in-law’s experience with pancreatic cancer which was extremely shocking and sudden and he was offered no treatment whatsoever which was very upsetting. Looking back it’s clear there was not much they could have done but they could have handled the situation a little more sensitively.
    I am still combing through information but I am incredibly grateful to everyone who contributes in forums like these which are so helpful to others. Hope we can contribute helpfully too when we have a bit more experience and understanding.
    Thanks again Jane, so appreciated.
    Rachel

    #148441

    rosary
    Participant

    Hi Rachel , your dad is lucky to have you helping pull some of the info together , it is confusing to start with …. Jane has offered wise words which are hard to add to

    You mention the Lister Hospital – which Lister is that ?

    #148483

    sdfsjdkl
    Participant

    Hi Rosary
    Sorry for the delay – things have been so hectic lately…
    My dad has now had a phone appointment with the Lister hospital haematology dept (it’s in Stevenage, Herts) and the doctor was very kind and reassuring. He seemed to say that the test results were consistent with my Dad’s age. thanks to this website I got my Dad to request a bence jones test and that looks to have come back negative. The consultant is doing more blood tests in 3 weeks and in 4 weeks he is having a full body PET scan to give him a full check over. All the waiting is difficult but in reality we’ve been lucky to have had quite quick feedback and results. But I was going out of my mind when I first posted here and now I am feeling more calm.
    Big thanks to everyone for their kind sharing of information and experience
    Rachel

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