This topic contains 15 replies, has 10 voices, and was last updated by 
mhnevill 11 years, 6 months ago.
Hullo everyone, this is my first post to the Forum having been diagnosed last week.
Just got a copy of the letter sent from hospital to my GP, and this mentions Paraproteinaemia a word that was not nmentioned when I was having tests in hospital.
What is it?
My story is that I suffered blurred vision a couple of weeks ago, went to opticians who immediately referred me to the eye clinic at my local hospital. From there I was passed into the Emergency Assessment Unit where CT and MRI scans were done as well as numerous blood tests.
Eventually passed to Haemotologist at which stage a Skeletal Scan was carried out. This showed mulitiple lesions in all my bones and skull.
I now go for a bone biopsy tomorrow
Hello Alpenator,
Welcome to the site – as everyone always says, sorry you've had to join but this is a very friendly and helpful site.
You must be in shock having found out so recently. All this new terminology too!
I think that is just a fancy way of saying you have paraproteins which are the key 'marker' for myeloma, which are used to track their disease. The way I understand it is that plasma cells are supposed to be the 'factory' cells in your blood, pumping out antibodies which come in different types to fight different things. When you have myeloma, the dodgy plasma cells multiply (causing all sorts of other damage by crowding other good things out and often stopping healthy bone formation, causing anemia etc). These dodgy cells also pump out a useless 'paraprotein' instead of a useful antibody. They are also known as 'monoclonal proteins' or M proteins or sometimes M-spike. Or people on here might just write PP for paraprotein.
You could ask what your paraprotein number is – and then with treatment hopefully you will watch that number go down as low as possible. But that isn't measuring the cancer directly, it's measuring what the cancer cells are pumping out. It seems like sometimes there is a time lag (the cancer may be gone but the paraproteins have a longer half life so may show up in blood tests a while longer).
The bone marrow biopsy looks actually at what's going on the in the bone marrow – how many plasma cellls, what they look like etc. It does hurt, but it's a good way to see what's going on. I've had 5 and some were really painful, some not so bad – hope yours goes ok.
Just to confuse things more, some of us with myeloma don't make paraproteins, we just make 'light chains'. So we have tests to count those instead of paraproteins. (A full paraprotein has heavy chains and light chains combined).
I'll leave it there…. and apologies for the slightly unscientific explanation, I'm an English graduate so it's all been very new to me in the last year 🙂
Helen
Hi alpenator,
Sorry I am not sure what the terminology means but Helen's explanation looks pretty good to me. Sorry you have had to join this happy band….my partner Colin was diagnosed in October 2011. It has been a damn scary roller coaster ride, but the medical teams have done a grand job to get him through to sct in October/November 2012 and now he's in recovery 🙂
Good luck with your treatment and remember to ask lots of questions so that you know what the team are doing and why. It's your body you know 🙂
Vicki and Colin x
Hi Anthony
A warm welcome to the Forum.
And I see Helen has sorted you out 😎 .
Where are you having your treatment ? Hope the BMB went well.
Tom Onwards and Upwards
Thank you all for your comments.
The BMB (note the jargon) went well yesterday, but I was surprised when my next appointment was made for 24 June, seems a long time to wait for the next step.
I am going to Queens Hospital, Burton on Trent by the way.
Currently I am most concerned about my eyesight which has been badly affected (it was why I went to opticians in the first place); and the back pain for which I was given some pain killing patches yesterday.
Now waiting impatiently.
Thanks again
Thanks Helen, that was all very useful. See my general reply earlier.
I have my initial paraprotein number which was 17.4 but I dont know what the scale is; is that high or low?
Bit disappointed about lack of information from hospital,but I have all the relevant contat numbers there.
Hi Anthony,
It is all a bit confusing with all the medical jargon and different blood test numbers. There isn't a scale for paraprotein, it is just one of the things that are used to diagnosis Myeloma and track the disease. Other factors that are looked at are bone damage/lesions, the percentage of plasma cells in your bone marrow, light chain results if this applies, kidney function and a myriad of other things. You will learn what applies to your situation and then you will be able track these numbers. For example, when my husband Phil was diagnosed his paraprotein was 32 and now a year later the paraprotein is down to "a trace". Phil had quite a few lesions and some bone damage at diagnosis and so some of this has been fixed (two leg operations to stabilise both femurs) and the rest is being monitored with scans. We know other people diagnosed with much higher PP numbers but with no bone damage so each case is unique.
I hope this helps a bit.
Megan
Hi Anthony, 17.4 is not high, in fact it is not bad at all. My PP has just jumped up to 17.4 following a relapse from my SCT, it was around 2.3. When I was diagnosed, Jul 2009, it was 33.5 and the Doctor's did not consider this alarming.
Welcome to the club by the way 😀 .
Kindest regards – vasbyte
David
Thanks for that, a bit reassuring.
Hope that you are progressing
Thanks, good luck to you both
Thanks Helen
A very full reply that answered a lot of questions. I know that more measurements are being taken after yesterday's biopsy (which did hurt a bit) and I have just had a call from the consultant asking me to see him next week.
Onward and Upward
Hello Anthony
and welcome not a place you would really want to join but you will get much help and advice here I think they will be talking about paraprotiens which are measures of how bad your Myeloma is 17 is not so bad it was a lucky visit to the opticians for you the anaemia part could be your blood count is low Myeloma can cause this and you probably aanaemic I was when first diagnosed needed 7 units of blood and have remained anaemic but i now have EPO to keep my levels up Good luck
regards Jo
Hi Anthony, I will add my welcome, not where we want to be, but here we all are.
Strange these comments re paraprotien readings, at worst mine were at 38 now after stem cell transplant they are at 2.2 and I am in partial remission.
You mentioned BMB, I attend the Leicester Royal Infirmary, I've had 1 BMB and I was given gas and air while they struggled to do the procedure, the gas n air really gave me a high and obviously helped with any pain, great. I thought that gas and air were the norm but obviously not.
I am sure that 24 June will come round quickly. List all the questions that you want answering, hopefully you have someone to go along with you.
If you get concerned about anything the staff at Myeloma UK are really helpful.
All the best for the future.
Regards Tony F
Hello,
Glad you're seeing your consultant next week – 24 June does sound like too long a wait.
With the BMB (well done on the jargon!!) I was told when I first had one that it may give some results which come quickly, but some of it always takes a week (they have to stain it with something or wait for something to happen). I was in hospital when I first had one done when they were trying to figure out what the problem was. The next day I got the 'you have a type of blood cancer, we don't know which' shock, as that was somehow immediately clear from the BMB. But only a week or so later found out it was myeloma. For some reason (age? or because no PP in my blood) they spent quite a while saying 'we're a bit confused about what it is'.
Nowadays it always seems to be a week at least till I get any BMB results. So the timing of your appointment makes sense.
It's horrible waiting for appointments and results. Then again, it sounds encouraging to me that you're well enough to go home and wait. If you had kidney problems or hypercalcaemia or generally any major alarm bells from your bloods, they wouldn't be giving you that time, I don't think. I was admitted to hospital (didn't come out for 4 weeks!) and immediately put onto bisphosphonates and steroids as I had both of those, and in general the whole vibe was 'we don't have any time to wait before starting treatment' which was very stressful. Hopefully you've caught it before it's done as much damage as it could have.
Good luck with it all, and do ask questions and strongly consider getting a second opinion or contacting different hospitals – all the advice seems to say that and you do have that right, and it sounds like you have some days to do that. Though equally if you feel comfortable with your consultant, just go with it and put your faith in it – there are some great treatments out there nowadays and still more in the pipeline. And I've met someone who has had it for 17 years (remissions of 7 years then 10 years) which I find always helps remind me that there is a lot of variation around the median statistics.
Helen
PS Nottingham is meant to be very good, and might be within reach?
Hello Anthony, sorry you've had to join us and we've all asked the questions about how and why but at least you are not alone. I think the best thing is not to get too engrossed with the data. As everyone says, the MM affects everyone differently and is unique to each individual. An example is that my PP level has been upto 110 and yet I have not suffered from broken bones nor kidney problems. My resistance to general viruses is low though – major bout of Pneumonia suffered and now Liver Enzyme issues.
So, don't panic too much, you will have lots of questions, lots of anxieties but there is a lot of help and support out there. As a point of interest I have found the Myeloma nurses on this website helpful – we live in Germany and my treatment is out here so I just needed to check something that I may have lost in translation.
Anyway, it can be hard, but you are not alone.
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