MGUS

My name is Debbie and I have MGUS.  My paraprotein is currently at 13.4 (1Gg kappa).  I was diagnosed about 2 years ago.  I am monitored every 6 months and see a haematologist.  About 18 months ago, I had a bone marrow biopsy, CT scan and skeletal survey and it was clear of myleloma then.  My haematologist said he will repeat these tests if the paraprotein reaches 20.

I also have another condition which is called necrobiotic xantho-granuloma which is even more rare (lesions on my legs and arms) which they say is connected (chicken and egg situation - which comes first?)

 If anyone would like to keep in touch, that would be lovely.  I'm out of "the initial shock of it all" stage but still get down sometimes as I'm a lone parent of a daughter aged 8.

Thanks and look forward to any replies. 

Best wishes,

Debbie

Hi Debbie 

My name is Cameron and I am from the UK.  I am actually Scottish but live in England.

I was diagnosed in November 2004 with MGUS but my paraprotein reading by then was around 40.  I had a routine blood test for an unrelated problem and it was then I got the shocking news.  However, you learn to accept things and adapt and we have spent the last 2-3 years making the best of things, taking holidays etc. whilst I have been well. 

My parap level is now up to 60+ and I have just started on my first course of treatment.  The bizarre thing is that I have been feeling 100% fit and have shown absolutely no symptoms at all.  My consultant and his team felt that this would be the optimum time to commence treatment before any serious symptoms began.  The treatment is oral which I can administer at home so I only have to attend hospital once every three weeks for a blood test and a re-prescribing of drugs.

I realise that your situation is much less advanced than mine and hopefully, like me, you will have 2-3 years symptom free. I hope so.

Let me know if you want some more information and in particular the treatment and side effects which I am receiving at the moment.  I wouldn't mind being in touch with someone who is in the early stages of treatment, just to compare notes and provide some moral support.

Keep strong and most importantly - enjoy life.

Hi Cameron

Thanks for replying. You sound really strong and postive - have you still got 'just' MGUS or has it moved on?  Hope you don't mind me asking too many questions.  I don't really have many people to talk to about it.  The ones I might talk to if I wanted to don't mention it and it's not the sort of thing you bring up in conversation.  Before, people just said 'you can just as easily die from another cancer because of the statistics' which I know is true so I don't like to 'bother' people like that and have them think I'm feeling sorry for myself!!  I do find talking helpful for me though.

I'm from Devon, about 7 miles from Torbay. As I mentioned I've got a daughter who is 'my world' and I am in my first year as a student nurse.

Sometimes, I wonder if there are links, ie genes, lifestyle, medications, chemicals (probably a little of each) to contract this MGUS or myeloma.  I know pesticides and particular chemicals are linked but you don't seem to hear many people who have been exposed to them.  

I haven't got any symptoms either at the moment. Are you taking chlorambucil or something similar and how are you feeling on them?

Take care of yourself, it will be really good to keep in touch, loads more to say and ask but I'll save it for the next time.

 ~Best wishes~

Debbie  

On 10/7/2007 Debbie G wrote:

Hi Cameron

Thanks for replying. You sound really strong and postive - have you still got 'just' MGUS or has it moved on?  Hope you don't mind me asking too many questions.  I don't really have many people to talk to about it.  The ones I might talk to if I wanted to don't mention it and it's not the sort of thing you bring up in conversation.  Before, people just said 'you can just as easily die from another cancer because of the statistics' which I know is true so I don't like to 'bother' people like that and have them think I'm feeling sorry for myself!!  I do find talking helpful for me though.

I'm from Devon, about 7 miles from Torbay. As I mentioned I've got a daughter who is 'my world' and I am in my first year as a student nurse.

Sometimes, I wonder if there are links, ie genes, lifestyle, medications, chemicals (probably a little of each) to contract this MGUS or myeloma.  I know pesticides and particular chemicals are linked but you don't seem to hear many people who have been exposed to them.  

I haven't got any symptoms either at the moment. Are you taking chlorambucil or something similar and how are you feeling on them?

Take care of yourself, it will be really good to keep in touch, loads more to say and ask but I'll save it for the next time.

 ~Best wishes~

Debbie  

 

No, I'm afraid I have moved on from MGUS.  The consultant calls it asymtomatic myeloma or 'smouldering' myeloma, which I suppose describes it accurately.

Since being diagnosed nearly three years ago I have been getting monthly infusions of Zometa which strengthens and builds up my bones.  Apart from that, I have seen the consultant every 8 weeks for a blood test and that's about it.  I am certainly not an expert but from what you have said of your paraprotein level, I feel that you have got some way to go before you get to my stage.  As long as the paraprotein remains fairly stable or increases just marginally, you could go on for a long time before they consider treatment.

One important thing that they kept telling me over the last 3 years is to drink plenty of water.  This is to safeguard your kidneys which apparently can be one of the early problems.  So 3 litres each day is the target and just make sure that there is always a loo close by!!

I was surprised to read that you are from Torbay.  I just assumed that since it was an american site, that you were from USA.  We visit Devon regularly, Brixham to be precise.  We stay at the Quayside Hotel and enjoy Torquay, Dartmouth etc. 

It's a pity you don't have someone close to talk to about your illness (without any symptoms, it seems daft to call it an illness).  It does make a big difference but I can appreciate your situation. I must admit, the last thing I wanted to do after diagnosis was to talk to anyone about it.  I always said that once I got ill, then that was the time to take it seriously.  Until then, I just wanted to get on with my life and enjoy myself.  You should do the same. 

However, I can remember the quiet moments when my thoughts turned to the uncertainty of the future but I'm afraid that I am a fairly typical bloke in that respect and I really didn't feel the need to talk to anyone, so I kept my thoughts to myself. 

Please don't worry about questions - I will be more than happy to answer any that you may have.

I have got my nightly Thalidomide pill to take now so I best get going.

All the best

Cameron

Hi,

 I hope you don't mind me jumping in on this message.  Cameron, I am suprised that they have started treatment with you.  I also have smoldering myeloma.  I have been told that they will not start treatment until symptoms appear. 

My levels are not as high as yours, so maybe that is it.  What was your BMB count?

I wish both of you the best.

Terri

On 10/8/2007 terbear wrote:

Hi,

 I hope you don't mind me jumping in on this message.  Cameron, I am suprised that they have started treatment with you.  I also have smoldering myeloma.  I have been told that they will not start treatment until symptoms appear. 

My levels are not as high as yours, so maybe that is it.  What was your BMB count?

I wish both of you the best.

Terri

Hi Terri

No problem in contributing - happy to hear from you.

I was showing no symptoms at all but the paraprotein count was gradually increasing and once it got to 60+ that was the trigger point for my consultant to start treatment (presumably before any serious symptoms appeared).  The fact that your count is lower probably explains the reluctance to treat - long may that last for you!

I am being treated at the Queen Elizabeth Hospital in Birmingham, UK which is a Centre of Excellence and I have the utmost confidence in their medical team having worked there for about 12 years.  I was fortunate to have been diagnosed very early and the last three years have been taken up just monitoring parap levels.  

I am assuming that your are from USA where the drug regime for Myeloma is obviously different.  Our National Health Service which is free to UK citizens is often stretched financially and treatment can sometimes be limited by budgetary restraints.  For example, Velcade is only available as a second line treatment. 

You mention BMB - I'm not sure what that is.  I have only focussed on my paraprotein levels which I reckoned was always going to be the trigger for treatment.  Other blood and urine results were always stable.

Take care and enjoy life.

Cameron

On 10/8/2007 Cammie wrote:

 

On 10/8/2007 terbear wrote:

Hi,

 I hope you don't mind me jumping in on this message.  Cameron, I am suprised that they have started treatment with you.  I also have smoldering myeloma.  I have been told that they will not start treatment until symptoms appear. 

My levels are not as high as yours, so maybe that is it.  What was your BMB count?

I wish both of you the best.

Terri

Hi Terri

No problem in contributing - happy to hear from you.

I was showing no symptoms at all but the paraprotein count was gradually increasing and once it got to 60+ that was the trigger point for my consultant to start treatment (presumably before any serious symptoms appeared).  The fact that your count is lower probably explains the reluctance to treat - long may that last for you!

I am being treated at the Queen Elizabeth Hospital in Birmingham, UK which is a Centre of Excellence and I have the utmost confidence in their medical team having worked there for about 12 years.  I was fortunate to have been diagnosed very early and the last three years have been taken up just monitoring parap levels.  

I am assuming that your are from USA where the drug regime for Myeloma is obviously different.  Our National Health Service which is free to UK citizens is often stretched financially and treatment can sometimes be limited by budgetary restraints.  For example, Velcade is only available as a second line treatment. 

You mention BMB - I'm not sure what that is.  I have only focussed on my paraprotein levels which I reckoned was always going to be the trigger for treatment.  Other blood and urine results were always stable.

Take care and enjoy life.

Cameron

 

Cameron, bmb, i think is beta -2 microglobulin,which in normal range is 1.6 or less.  My question is ......are you saying your igg blood test is in the 60's?  I thought normal range was 660-1440.......this is tumor burden load technically immuno gamma globulin...i have multiple meyloma and live in the us. ..i was at 6500 on my igg when i started treatment.. Decadron/vedcade/doxirubicin combo by iv. I only did it three months and was back to normal...i passed on a bone marrow transplant.. I also received pamidronate for bone repair.  Doug W.