[juliehParticipant]

Hello

I recently posted elsewhere on this forum about my elderly mother who is currently undergoing fourth line treatment for myeloma.Whilst she has had the disease (last 6 years) I have kept well informed about the illness, reading a lot of Myeloma UK materials and attending info days which I’ve always found very helpful in regards to my Mum.

In retrospect, I suspect my Mum had the disease for a while before she was actually diagnosed (back pain and weight loss for about a year and she was severely anaemic by the time she was diagnosed). I know they say that there is probably not a genetic link with myeloma, but I am middle aged myself now and when I have an off day or a twinge in my back I do get a bit worried. What I am wondering is – for all you people who were diagnosed with MGUS or smouldering myeloma –may I ask –  what actually led up to you having the tests for those? Did you have symptoms and if not, what factors led up to you having a blood test or urine test……? (as I know that in the cash strapped NHS these are rarely done routinely nowadays). I wonder how many people out there are walking round with a timebomb they know nothing about?

Sorry for all the questions but I am intrigued as to how people are diagnosed in the pre or very early stages of the disease.

Best wishes to all

Julie

• This topic was modified 11 years ago by  julieh.

[john-bParticipant]

Hi Julie,

6 years ago I was having blood tests prior to having a knee replacement when it was discovered I had MGUS. I’ve been told I may have had it for years before without knowing. I was monitored every 6 weeks, then 8 weeks and then 3 months until last July I received the news that it had turned into Myeloma. Fortunately I did not have any pain but the steroids caused a few problems. Hopefully I am on my final cycle and see my consultant this coming Thursday before possibly going on to SCT.

Best wishes to both you and your mother

John

[docmikeParticipant]

hi Julie
My smouldering myeloma was found at (?routine?) blood test for monitoring blood pressure treatment and fasting lipids/blood sugar which also included a liver function test(LFTS).this showed a very high globulin and lead to follow up tests on the same sample (immunoelectrophoresis and immune fixation which are not routine at all !!!).The other test which may be performed routinely in other situations with a blood count is an ESR which is often very high .
The incidence of mgus is about 2% in 60yr olds but there is no screening programme but not all patients with mgus will have the above abnormalities on the tests above. The best sceening test would the serum free light chain levels and ratio but this expensive and not always available evenfor monitoring smoldering myeloma after diagnosis.
Significant back pain in mgus or smm should lead to test to confirm active myeloma.
(urine tests for bence jones protein are cheap for screening but my tests have been negative!)
Best wishes for you and your mother
Mike

[jillsParticipant]

Hi Julie,

My Mum was diagnosed after her GP found raised ESR levels in her blood over quite a long period of time during which he gave her Prednisolone as he thought it might be related to arthritis. Interestingly this approach probably did keep the MM under control for a while but he eventually sent her to a specialist who did the various tests – bone marrow biopsy, full body scan and specific blood tests and then diagnosed MGUS. About a year later it started to develop into full myeloma so he started CTD. Apart from the ESR she didn’t really have any symptoms although her light chains got up to 10,000 at one stage!
All the best,
Jill

[juliehParticipant]

Hello again and thank you so much for all your most helpful responses. It would seem then that some sort of crisis precedes testing for myeloma/smouldering myeloma/MGUS in the majority of cases; and I also note other people in the forum who say they were diagnosed from “routine” blood tests – although I was not aware that the NHS carries these out. Perhaps some GPs are just more zealous than others (?)

Jane – sorry to hear about your pneumonia, I hope you are feeling much better now and I’m glad that you have had good care and are being closely monitored.

John – really sorry to hear that your smouldering myeloma has turned in to full scale myeloma; best of luck with your treatment and SCT if you and your consultant decide to go for that.

Mike – thank you for the information on the blood tests. From what you have said I guess you are at the smouldering myeloma stage – and I hope you stay well and smouldering only.  I think it would make sense for people to have routine bloods when people get into their 50s and 60s for MGUS, but I guess there just isn’t enough money available in the NHS for this.

Jill – good that they picked up on your Mum’s illness early. My Mum had a bad experience where she was unwell for a year or so but her GP did not recognise the symptoms. By the time she had a blood test she had lost about 2.5 stones in weight and was severely anaemic (!).

Thank you again everyone and all the best xx

 

[graham-cParticipant]

My own diagnosis came about as a result of what turns out to most likely have been the joint effect of what was a hernia and a prolapsed (slipped) disc neither of which I knew about, but this has resulted in the diagnosis of a blood abnormality indicative of a malignant process.

I’m not receiving treatment, though I would presume that I have a higher risk factor for progression having previously had kidney cancer. I guess that this is because the hospital would prefer to wait to know where the illness is likely to appear and, though this has never been discussed, I’m not against this tactic as long as my results don’t become too extreme.

So yes Julie, it seems a reasonable assumption that it’s the symptoms that are the cause for both seeking a diagnosis and perhaps even for starting treatment. I’m possibly less disturbed by a diagnosis of a malignancy than the hospital believes (being a second time) and, in the same way that the path of Myeloma can be very different for each person, everyone’s reaction will differ too. I’m not especially strong willed, I just feel lucky considering normal kidney cancer survival rates.

Even if it were possible for hospitals to screen everyone, doing so would probably blight many people’s lives needlessly with evidence of an illness that may never progress.

 

[coastiParticipant]

Hi Julie,

My MGUS was diagnosed from a routine blood test at the GP that I had for something completely unrelated and I had no symptoms.  Blood test showed a high level of paraproteins and I had more tests after that.

I’ve read that stat before that around 10% of over 60’s have MGUS. But if 10% of MGUS people go on to have MM that’s a lot of people and MM is a rare disease???

Laura

[juliehParticipant]

Hello Graham and Laura

Thank you for your responses.

Graham – sorry to hear about your kidney cancer, wonderful that you managed to beat that. I hope you also will not need treatment for the myeloma any time soon.

I know what you mean about screening tests that may blight people’s lives but an alternative philosophy may be that knowledge is power and someone affected may want to live life differently (i.e. less work, more play) if they are aware that there may be a real possibility of symptoms/treatment in the future.  I think for some people it could also take away the risk of early bone damage/renal problems if they are being monitored regularly whereas it seems that some people (like my Mum) present later in the disease already having sustained physical damage.  It’s a very grey area I think.

Laura –  very sorry to hear about your diagnosis and glad to hear your SCT went well (read your other thread). I was not aware that there are routine blood tests for paraproteins – only things like full blood count, ESR and C-reactive protein (?).  I was also at a Myeloma Infoday recently and I thought they said that only 2-3% of people with MGUS go on to develop myeloma but I may be mistaken.  I know what you mean though – since my Mum was diagnosed I’ve met/heard of a few people who are affected by the disease in one way or another.

Best wishes x

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