[ShelleyParticipant]

Hi,
I'm a few days before my first hospital appointment, so have no diagnosis. My hematologist suspects myeloma, but I haven't done a bmb and do not have crab symptoms (according to my blood tests and how I feel) so I am desperately hoping that it is just MGUS. (From what I have read and from my blood tests I think I am high-risk MGUS).

I'm 42 by the way.

I've been reading excessively about myeloma (and MGUS) since the name were first mentioned by the doctor a couple of weeks ago. There is a distinct lack of info on younger patients. Is mm in young people treated any differently from older people?

I spoke to an older lady suffering from mm and she described it as a chronic disease. But what does chronic mean for young people? 10 years to a 70 year old might be chronic. But 10 years to a 40 year old is a death sentence. (Sorry for being morbid).

On this website it says "MGUS is a common condition in older people and is present in about 3% of people over 70 years of age."
Does anyone have ideas on where to find reliable info on the progression of MGUS to mm in younger people?

[meganjaneParticipant]

Hi Shelley,

Welcome to the forum. I think the reason there is such a lack of info on younger patients is because it is still usually older people who are diagnosed with MM and although many younger patients may have MGUS it may not be picked up due to lack of symptoms. When my husband Phil was diagnosed with MM in May 2012 at the age of 43 I had discounted this as a possibility due to his age. His GP also thought it was unlikely so the diagnosis took longer than it should have 🙁

In the UK the treatment for MM does not differ fundamentally between younger and older patients. The journey varies from patient to patient and treatment will be changed and adapted along the way depending on how some one responds and what, if any side effects develop. There are quite a few links on this website that describe the different treatment options:

http://www.myeloma.org.uk/information/how-is-myeloma-treated/

There is also the possibility to take part in clinical trials in some instances. My husband Phil took part in the PADIMAC trial which meant he had velcade as his first line treatment along with dex and doxorubicin.

I hope you get some of the answers you need at your hospital appointment.

Megan

[Gill20Participant]

Hi Shelley,

I don't often post on this site but regularly keep up with the topics. I felt I had to reply to your post as like you I was 42 when I was diagnosed with MGUS although it had been picked up 3 years earlier but was just put down to a long term virus until one doctor decided to do a bone marrow test. The only way it affected me was severe bone pain, tiredness and frequent chest infections.I regularly attended The Christie hospital for 17 years for them to keep an eye on me, a couple of times over the years I was borderline for treatment but never had any until I started to feel unwell and extremely tired in May 2010 my GP referred me back to The Christie as my next appointment wasn't due and it was all go from there it had developed into mm. I had 4 CDT treatments before having my STC in January 2012. I didn't have a good reaction to the SCT and was quite ill for several months, I thought I would never get better. However, I am back running my business and feel better than I have in years, the doctors are surprised that I have had a full remission given the length of time I had MGUS and my reaction to the SCT. I am now 62 and have not been ill for some time although a number of my staff have had colds and stomach upsets I did not get them. Also MGUS does not always develop into myeloma. I hope this helps you and puts your mind at rest.

Gill x

[ShelleyParticipant]

Thanks for your replies Megan and Gill.
I've been looking at my blood and urine tests and trying to figure out what they all mean.
I tested positive for Bence-Jones proteins. I've been looking online and it appears that it is indeed myeloma and not MGUS.
Would this mean that I have light-chain myeloma?

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