[doylerozParticipant]

Hi there.

Just back from my appointment after biopsy last week. Haematologist said I have MGUS. Biopsy showed 5% myeloma cells he said and my paraprotein level are still at 6. Forgot to ask was I still anaemic. So I have to go for bloods every 6 months and check up. Hopefully I just stay like that. They also need to watch my kidney function as my creatnine is at 240 and this is my transplant as my own kidneys failed in 1994.

 

I am 46 so hoping I can stay like this for a long time!!!! 😀 How long do you usually remain as MGUS?

thanks

[graham-cParticipant]

I am at five and a half years of being MGUS and I could go another 10 years with no change. There isn’t any way to predict other than by having continuing blood tests. The progression rate is really quite small. Last year I had a small blip that caused some excitement but they took another blood test and it turned out simply to be an isolated blip so, even if you get one set of abnormal results it isn’t necessarily the start of full blown myeloma.

It’s ironic that the less frequently you’re seen is an indication they don’t see you as being at greatest risk of ‘conversion’. I get bloods done once or twice a year and get results over the phone.

I just had my bloods done this week and I do feel a little nervous but, what will be, will be and chances are there is no change. If I didn’t have the tests I know that would ignore problems until it was too late. At least this way it takes the responsibility out of my hands. They’ll tell me and it’s in their hands.

[didtobuyParticipant]

I started with frequent tests like every 3 months and slowly stretched them out to once a year and more and continued playing hockey for another 15 years.  I try to not think at all about an MGUS diagnosis. I was really concerned many years ago with the lack of advances and stopped going to support group meetings because I was always the youngest by far and the faces were always changing. I recently went back and I’m still one of the youngest at 55. Now with some huge advances and exciting news in research I have big hopes that I may be cured in my lifetime or at least live in some form of maintenance therapy if I should progress to full blown MM.

[yvonneseParticipant]

I was diagnosed with MGUS over 3 years ago. My paraprotein level fluctuates between 11 and 13 . In last couple of months I have been experiencing awful bone pain in my back/pelvis and arms and legs and dreadful night sweats so my consultant has got me to have all the tests again…. bloods, PET scan & bone marrow biopsies. I am due to see her on the 26th September. I just put the pains down to arthritis as that did show up in various places when had skeletal survey done in past. Fingers crossed that all is still ok. I think if they had found anything they would have called me sooner – no news is good news!

[purdayParticipant]

Hi,

After my third lot of blood test (after 7 months), Dr has stated I officially have MGUS (paraprotein unchanged so far!) Though I must admit very nervous before the results, I will have to get use to this now!

Yvonne, all the best with your results.

Quick question to other MGUS sufferers, would you recommend Flu jab? I had a really bad chest infection last year (had previous one as well) so wondered if anyone else suffers with this?

 

Rachel x

[yvonneseParticipant]

Hi Rachel

I usually have a flu jab although I always had one anyway as I worked for NHS so was advised to have one.

I am a little apprehensive about my hospital appointment this afternoon I must admit but at least my consultant is being very thorough by getting me to have all the tests again. I am trying to stay positive that the bone pain is arthritis.

Yvonne x

• This reply was modified 6 years, 7 months ago by  yvonnese.

[purdayParticipant]

Hi Yvonne,

Thanks for the info on flu jab, I think I’ll will have one.

I completely understand your nerves, but it will ease your mind when you speak with your Consultant.

I’ve decided to start and try and eat more carefully now with the stress recently I must admit I’ve not really been looking after myself, just concentrating on the children to keep busy.

I will be thinking about you this afternoon,

 

All the best Rachel x

[yvonneseParticipant]

Hi Rachel,

My bone marrow biopsies have showed that I have now progressed from MGUS to smouldering myeloma. I really did not expect that.I thought I would be MGUS forever. My consultant says that because I am a younger patient ( I’m 56 ) it will be very likely that I will need treatment at some point.

I don’t quite know how I feel at the moment. Feel a bit numb if I’m honest. The consultant says that I will be going back to 3 monthly blood tests and hospital visits from now on.

It’s a strange thing being told you have cancer but not starting treatment as not anaemic, bones & kidneys stable which is good. She did say that I need to have pneumonia jab as well as my flu jab.

Sorry….I am gabbling on.

Regards

Yvonne x

[purdayParticipant]

Hi Yvonne,

I cannot give any information on Smouldering compared to MGUS. Apart from this site I use Margaret’s Corner:

link: https://margaret.healthblogs.org/

This I have found really informative on MGUS & Smouldering, as well as this site.

Always here if you need a chat.

Rachel xx

 

 

 

 

 

• This reply was modified 6 years, 7 months ago by  purday.

[docmikeParticipant]

Hi Yvonne ,
I can understand your concern having had smouldering myeloma myself at presentation in 2008 . I am sure i have written many posts on this in the past (possibly as docmike?).
Very briefly 10% of smoulderers never progress to myeloma and if you go 10 years as a smoulderer you risks drop down to mgus levels which is 2% per year. The mayo clinic in the usa produced the retrospective data on defining high risk,intermediate risk and low risk groups . which has been modified subsequently .Like all of us with myeloma you will become anxious just before your next test which in your case is every three months. Let us hope you are in the 10% .
In the meantime if you M spike starts to rise move to monthly tests and if not a yearly mri of spine is reassuring .
There is trend in trials to commence treatment in high risk groups before full blown myeloma which i would regard as an opportunity to treat myeloma in its early stages (smallest dose of malignant cells?).
Ask any other questions and i will try to help because i have had the same thoughts and worries as you are having now .
Mike /Michael

[doylerozParticipant]

Hi Yvonne,

Sorry to hear you have jumped from MGUS to smouldering. I am still still trying to get my head around things. I am sure you get to another stage and it is a case of getting your head around a different set of rules! I walked out of my appointment and didn’t ask any questions. Lots of things now I wish I knew answers for. But I found out now I am on 4 month appointments so back sooner than I thought. I was wondering if you could tell me about the difference in biopsy results. They said plasma was 5% and cd138 was 15%. Also wondered about everybody having PET scans done. I haven’t had that done. Should I be asking for that?

Thanks everyone,

xx

[yvonneseParticipant]

Hi Mike

Thank you for your message and words of advice. I am still trying to come to terms with the diagnosis of smouldering myeloma. I had perhaps got a little blasé when I was Mgus as I had read that people can live all their lives with Mgus without progression and I assumed that would be me. So I have to re-adjust my mindset I suppose and that will take time.

In the last couple of days I’ve felt like I’m not handling it well . It’s the mental side of it at the moment as I am generally well and my blood tests were stable really. I will get there.

Regards

Yvonne

[Author]

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