[beverleyParticipant]

Thank you, it seems that a lot of people are taking it and and seem to think it does them good. So definitely going to try it.

Bev

[beverleyParticipant]

Hi Jan
Thanks I will look into it further

Regards
Bev

[beverleyParticipant]

Hi
The radiologist will know all about MGUS and smouldering and it will dictate what he looks for if he has all the information.
I am a radiographer specialising in diagnosing breast cancer and there is nothing worse than a GP or surgeon only giving you half a story. If you have all the information it can change your diagnosis.
Anyway feel free to have a rant, the problem with smouldering is you look and feel fine physically but sometimes your “head is a shed” as they say

Jill x

[beverleyParticipant]

Hi Susie
Who asked for original lumbar spine X-ray? They
should have given all your clinical details to the radiology department including any pre exsistng conditions and what their clinical diagnosis was. As far as I am aware myeloma shows as lytic lesions on X-ray where as osteoporosis is a general loss of density. You could ring the MRI department to find out if they have received the request and ask how long the waiting list is. When you have your scan tell the radiographer you have MGUS and they can put it with your other details. Radiologists need all relevant information to make a diagnosis

Hope this helps
Jill

[beverleyParticipant]

Hi
I struggled with insurance as no insurance company can seem to understand smouldering, they only deal with active, and then don’t cover that!! But I am with Columbus and they have covered me, and for not much more than what a dear friend called “normal people”. That remark cost her coffee and cake

Love
Jill

[beverleyParticipant]

Hi
I was diagnosed in 2011 after blood tests for irritable bowel!!! I had a bone marrow biopsy to confirm MGUS but unfortunately I was a bit further on and was diagnosed as smouldering. I have an outpatient appointment every 4 months and I haven’ t a clue what any of my blood results are. This is my way of dealing with this silly disease and it is a bit like burying my head in the sand. I go by the principle that if I need to panic my fabulous consultant will inform me when and how much. I am not being flippant , but what I am saying is that there is no right or wrong way of dealing with this and it is a very individual choice. If you need to know all your results then that is your choice but don’t feel that is the only way.
I am a radiographer and I diagnose breast cancer so I am not stupid when it comes to the effects of cancer.
You will get great advice on this site, so take care and enjoy yourself as we could smoulder for years. By the way I take bisphosphonates as my consultant told me there is some evidencethat this slows down the onset of active myeloma. She says the jury is still out on the evidence but every little helps

Take care
Jill

[beverleyParticipant]

Hi Marie

Welcome to the smouldering club. I was diagnosed 2 years ago but I dont know how long I had it before then. There are probably hundreds of other smoulderes (not sure thats a word) but they dont know it because they have had no need for a blood test or other investigations.

Have you read the info sheet on smouldering myeloma? According to that the risk is 10% of smouldering patients will progress to active every year in the first 5 years, 3% in the next five years and 1% per year thereafter. So the longer you can smoulder the better.

You will learn to live with it, I cope most of the time and just have a blip before my blood tests every 4 month.
It's difficult to live with not knowing what is around the corner but as Dick said at least if it decides to become active we are meeting it head on. We have caught it early and with any cancer that's the best way to fight it

Take care
Bev

[beverleyParticipant]

Hi Boxer

I was diagnosed with smouldering myeloma 2 years ago , due to a blood test for something else, and thankfully my last blood test a couple of weeks ago showed no change. Everyone deals with this diagnosis in their own way and my way is to leave it up to my consultant to tell me when I need to worry. I know it is a bit like sticking your head in the sand but it works for me, I dont even know what my paraproteins are!! I am not being flippent , it is just that I have no symptoms whatsoever and it is easier to ignore if you are feeling well.
I do have off times usually the week before my outpatient appointment , but everyone is understanding and as I work in the NHS they know what I am going through.
So carry on regardless as the song says and remember there is no correct way just your way

take care
Bev

[beverleyParticipant]

Hello Anne
You will need time to get used to this I had 2 weeks off work sick as thing were getting too much and I needed some time for me. My mum had died in March from breast cancer, I had my cat put to sleep in June and I was diagnosed in August (not a good year 2011!!!). By the time November came I was ready to take someones head off. You will think every ache and pain is myeloma, but I try to think, if I didn't know I had this would I be concerned? There is a fine line with this as you cannot ignore symptoms but be careful, have regular blood tests, talk to your consultant and discuss worries and concerns with them. It is hard and I don't have any answers really except look after yourself and try not to worry too much (easier said than done especially at 3am)

Take care
Bev

[beverleyParticipant]

Hi
Thanks to everyone who has answered my e-mail. I actually feel a lot more positive about things. I was starting to get despondant about it but everyone has been really supportive and it is obviously not all doom and gloom (shouldn't have read some other web sites!!). As a radiographer I only see people in the later stages of this disease and at the moment I am completeley symtom free and as Teds31 says I do feel a bit of a fraud, but as though I am holding a ticking bomb.

Ronnie17 Have you had or asked for a skeletal survey? if it is clear ask for an MRI. In this situation peace of mind is essential.

Thanks again to everyone I dont feel alone anymore

Beverley xx

[beverleyParticipant]

Thanks I have been trying to ignore it for a year hoping it might go away!! I think it is called burying my head in the sand. Nice to know I am not alone

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