[laceyParticipant]

Hello. My husband is undergoing further investigations for what will most likely be diagnosed as MGUS (we hope nothing more). As you all know, the waiting and uncertainty are hard to take.

He was getting tested for high blood pressure a month or so ago, when they found protein in the blood. The gp ordered more blood and urine tests, which came back showing m-proteins in both. GP referred him to haematology and he had first appointment this past Monday (12 Feb). More bloods were taken (about ten tubes worth) and skeletal scan and mri requested, which were done on Friday. Seems to be going fast, and for that i thank the northumbrian nhs trust!

We are both knowledge is power kind of people but at this stage we have little of both. I’ve been reading up on the diagnostic terms and processes but don’t have his initial lab results with which to make comparisons (i’ll ask the next visit with haem). The only specific figure i remember from his initial tests is 14-something, but i don’t know what it refers to except that 100 is a bad level for it.

The haem was weirdly equivicol when i asked him about the possibility of smm. We don’t know if we should take this as a good or bad sign. His message was basically he doesn’t like telling people that they have smm unless they are at the point of treatment. But this was our first meeting. I’m sure as time goes on our communiations will get more refined/direct.

So now we wait…

Thank you for listening! There is just so much to take in right now.

lacey

[laceyParticipant]

UPDATE about results… just received a copy of letter from haem to gp about the first visit. In it he gives this description:

IgG kappa monoclonal paraprotein 20g with abnormal serum free light chain ration, kappa 90, lambda 6, ratio 14.5 ;  protein: creatinine ratio 80.

Can anyone tell me the meaning of these? I believe he is in the MGUS category based on the results, but… ?

Thanks, in advance!

[cygnetParticipant]

Hi Lacey

I’m sorry to hear you and your husband have joined our club!!

I was interested on your comment about the haematologist’s reluctance to use the term “smoldering.” I came across the same thing initially here in Kent when I was diagnosed three years ago and found it frustrating. My pp and bone marrow numbers said I was smoldering according to the guidelines but I was still branded mgus at the hospital clinic.???

Eventually though a helpful haematologist explained to me that they only use the two terms – not smoldering- because it makes it easier for those of us not on treatment in terms of travel insurance etc. Having navigated travel insurance since diagnosis and the subsequent pneumonia my impaired immune system blessed me with ( hmmm..) I can imagine it definitely would make life more difficult. They seem to cope happily with mgus ……

That said , I thoroughly agree “knowledge is power” and you do have to be your own advocate with this. I am lucky as I have an exceptionally good gp so if I have concerns I speak to him. I am not particularly happy with the haematology clinic where I am monitored but all the time I am stable I will just trundle along there and grit my teeth.. However if I am concerned at any time I think I will just bite the bullet and scrape the money together for a private consultation with one of the London based myeloma specialists. My gp has already offered to refer me elsewhere but I am biding my time until I feel it is absolutely necessary.

I hope this helps. I also recommend talking to the Myeloma Helpline nurses for any clarification you need – they are superb.

Good luck

Cx

 

[laceyParticipant]

Hello cygnet, and thank you for responding!

I hadn’t thought about the insurance angle… very interesting and, in fact, smart. When we return to the Haem I will ask about that, just to make sure we are all on the same page.

I’m sorry you are going through this rabbit-warren of a disease. Have you started treatments? Are you still smoldering?

I really appreciate your kindness!

L

[cygnetParticipant]

Hi Lacey – apologies for my slow reply.

Yes I am still smoldering – and I hope to continue to do so for many years!

I am not on any treatment just what the optimists call “active monitoring…” and the pessimists call “watch and wait…” ! I think your attitude to this is crucial – you can chose to be a victim – or not. In practice this means regular blood tests to check paraprotein levels and urine for light chains etc.Initially I went  to the hospital every 3-4 months- now I am on six monthly checks. In addition I take some supplements I believe help me and focus on keeping fit and well.  If you want to understand your husband’s results its probably best to ring and speak to the Myeloma nurses on the Info line – they are amazing!!

I think it takes a while to get your head around this diagnosis….and it’s your choice how to manage it. There is alot of good advice on here and it has helped me considerably. I have not told anyone other than my husband so my adult sons, wider family and friends know nothing about it. Somewhere I read that you can chose how and when you share this diagnosis ( these may have been some of Rebecca’s wise words) and I have decided  to keep it quiet until I need treatment. This is a personal choice and I revisit it regularly – the downside is, it can be a lonely place to be….

There is a very good article on “sexy” smoldering myeloma (!) by Karen Crowley on the American Myeloma Beacon website. That reinforces our  shared view that “knowledge is power” and reminds me about the value of living in the moment. My diagnosis came as my mum was dying of cancer so I found mindfulness really helpful.

Good luck and do keep asking whatever you need to. My own hospital clinic  – which I have learnt to regard as a monitoring station -has given me very little information and support so this website is invaluable.

Love and hugs,

C x

[misswoosieParticipant]

Clinical Trials

Hi Lacey,
I notice that you haven’t updated for a while. I hope this isn’t a bad sign.
I have IgM Kappa MGUS-except not really “of unknown significance” because my paraprotein level doesn’t meet the criteria for MGUS-it’s tiny, AND I have associated Anti MAG antibodies which are causing peripheral neuropathy and balance problems, so the clinical significance of the Monoclonal protein is known!
I think this is a problem with how medicine classifies these critters (paraproteins).It’s an oversimplification of what is a complex syndrome with a lot of heterogeneity and there’s still alot to discover about them, especially Anti MAG, which is apparently very rare, especially in females. Trust me!
As I have IgM paraproteins, unlike your husband, progression to MM is much rarer, however the risk that these nasty’s will progress to types of Lymphomas ie Acute Lymphatic Amyloidosis or Waldenstroms macroglobulinaemia is higher.

Anyway, I thought I’d let you know that I’m also in the NE of England in Durham and see a Haem’ there.
I’ve also seen a neurologist who visits from Newcastle.
I actually worked as a Nurse Specialist/Practitioner at North Tyneside and Wansbeck, so I probably know the Haematologist your husband has seen.

I also wanted to let you know that Freeman Hospital are recruiting for a clinical study called Unravelling MGUS. There’s no treatment involved. They hope that by collecting information and blood samples from people with MGUS and then following up in a couple of years to see how they’re “progressing” they can learn valuable information about which people are more likely to progress to MM etc. As there seems to be a lot of missing information I was keen to try and help. I have the details and they’re also on the clinical trials section of the Myeloma UK website.

[nonniParticipant]

Hi misswoosie
Do you know if the Freeman Hospital trial is open to anyone who has been diagnosed with MGUS, or is it just for people who live within a certain radius of Newcastle?

[misswoosieParticipant]

Hi Anne- not sure about that. I’m about 15 miles away and contacted the research nurse at Freeman and she asked Prof Jackson who’s the study investigator if I could go into the trial and he was fine with that. I’m actually going there tomorrow for first visit. There are only 2 visits.This one and another in 2 years time.
Not sure where you are in the country, but there may be a hospital that’s taking aprt in the study nearer to you.
If you follow this link Unravelling MGUS it has all the information about the study.
At the bottom there’s a list of participating hospitals and contact details.

Hope this helps,
Susan

[nonniParticipant]

Thanks for your help, Susan.
I’ve found a local hospital that’s involved in this trial so I’ll ring them tomorrow.
Anne

[misswoosieParticipant]

Welcome Anne. Hopefully they’ll be happy to enroll you in the study.
Susan

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