[purdayParticipant]

Hi,

Just been told after lots of blood results I have a paraprotein level of 3, possible MGUS? All other bloods were ok (had lots of test done). Awaiting a Urine test back (normal one not 24 hours one). Receptionist will not give me back the results because GP not in, to sign them off until Monday!!! To be honest I am really struggling with emotions at the moment and  in a complete state!!!! I am 46 year old female with young children and at the moment struggling to put anything in perspective about this and what could lead to in the future. First time on any forum. Really don’t want to bother anyone,  but as I said I’m not coping very well. Thanks Rachel

[beetlejuice54321Participant]

Hi Rachel

I think you would have to have a bone marrow biopsy to determine whether it is MGUS or not. If the biopsy comes back with less than 10% myeloma cells in it then your are diagnosed with MGUS.

The biopsy is unpleasant (I have had 6 over the years) but I always treated it as my way of fighting the disease as it often hurt a little bit.

Now for the positive news: I have been told by doctors that you can live for years treatment free with MGUS – you probably will be monitored for progression to myeloma, but in most cases I think people do not progress from the MGUS stage. So if you are diagnosed with MGUS do not fret. You could well be fine for years and years.

(just so you know, I was diagnosed aged 33 with an extramedullary plasmacytoma and MGUS level of myeloma in my bone marrow. Four years on I am fine and very optimistic for the future. I know it is scary at first but be confident that there are many of us out there who have done well and I’m sure you will too).

 

good luck.

[purdayParticipant]

Thank you Beetlejuice, for replying to my post. Thanks for your advice and information it really helps. I am hoping that with time I can be a bit braver. Thanks again for taking the time to reply. Rachel

[noeyedeerParticipant]

Hello Rachel,

Sorry to hear you have had this news. Try not to panic, what you are feeling and the range of emotions are completely understandable and until you have more information your mind will run wild.

My husband has diagnosis of MGUS for 5 years now with paraprotein levels slowly rising from 16 to now 28. He is being monitored closely with bloods every 3months, he has no symptoms and doesn’t require treatment at this stage.

Take a few deep breaths and when you feel able, read about MGUS, so you can have some understanding of what your test results mean, knowledge is power. Then you will feel able to write down questions for when you see health professionals.

It will seem like a long weekend until you can get to see your GP, keep busy and look after yourself.

Julie

[purdayParticipant]

Hi Julie,

Thank you so much for taking time to reply. As you stated keeping busy is good until I know more information (helped by the fact that one of the children has ended with the sickness bug so this has kept be  very busy on Saturday!) I really didnt want to bother anyone on the forum as people are dealing with alot more than I am. But once I had the first findings from the GP and then an overload of information about MGUS/MM etc I found on the internet I went into panic mode. Thank you for your kind words and all the best to you and your husband.

Rachel

[teds31Participant]

Hi Rachel, I suppose you have seen your GP now and have more information,but I thought I would just add a comment as I have had Smoldering MM for about 10 to 11 years ,its a very strange cancer and its different for every one ,like a personal thing. My paraprotien is usually about 12, I see the consultant every 3 months and generally ignore it the rest of the time. I hope you see a consultant he will give you a better idea of your progress for the future as GPs dont usually know a lot about MM. All the best and keep coming on this site as it always helps to talk to people who understand,and no one on here will mind how ever many questions you ask. Good luck. Ted

[docmikeParticipant]

Hi Rachel
If your next 2 tests(?over the next 3 months) still show a paraprotein of 3 (+/-3 the test results do fluctuate im afraid)you most likely have mgus but by that time you should have seen a haematologist who will have arranged the appropriate tests (//bone marrow and skeletal survey )to confirm this .The risks of mgus turning into myeloma are on average 1-2% per year and 2% of 60 years old have mgus the majority of whom are unaware because it generally does not show on routine tests. I hope that puts thing in perspective .
hi Ted , If you have had smouldering myeloma for over ten years you risks are now that of mgus 2 % per year according to the only long term study of smoulderers in the mayo clinic usa good news indeed.
hi Julie
Without wishing to alarm you I think you husband has moved from mgus to smouldering myeloma with that rise in paraprotein (unless he has a repeat bone marrow recently ) if it goes over 30 he is at high risk.
you can see my past posts on smouldering myeloma on this forum or ask for further info
Mike

[teds31Participant]

Hi Mike, I haven’t been without problems most recently I am having IVIG infusions monthly due to chest infections, and my kidneys are showing signs of low function but these are problems that are due to the length of time I have had the MM.Thanks for the reply .Ted

[purdayParticipant]

Hello Mike & Ted, thank you both for your messages and information. Yes I must get used to this waiting game ( im not very good at this). Its just a very strange disease and all the information and how it can vary is quite overwhelming. Thanks again. Rachel

[carlyParticipant]

I was diagnosed with mgus when i was expecting my second child. That was 37 years ago.
My consultant did blood tests annually just to watch. I now have 4 grandchildren! Just live your life.

[purdayParticipant]

Dear Carolynne, firstly very sorry for not getting back to you sooner, but I’ve been away for Easter. Thank you so much for your story, I cannot tell you how much it has helped my state of mind and also to get everything into perspective. Many Thanks again, Rachel

[carlyParticipant]

Pleased i could help! Best wishes.
Carolynne

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