[loopykatParticipant]

I’ve had an appointment with a haematologist this week and have been told that I most likely have MGUS or smouldering myeloma, they’re fairly sure it’s not multiple myeloma for now. It was all quite a shock as I was having blood tests for other things and I’m only 40. I’m now waiting to have a bone marrow biopsy and CT scan to diagnosis which. I’m feeling a bit lost at the moment and wanted to connect with people who have been through the same thing.

[robert0439Participant]

Good Morning,
Although I was much older at 62, I too was diagnosed with smouldering myeloma, where following the same procedure that you will be having, “smouldered” for around 5 years before I had a SCT in Nottingham.

The bone marrow extraction is quite uncomfortable but a necessary procedure as they can then tell a lot from it and decide what to do next.

My myeloma issue is that I produce Paraprotein which others don’t. Saying this, I’m now 71 and in pretty good health as I’m being managed on a regimen of IRD. Two types of oral chemotherapy and steroids.

Since I was diagnosed there has been an enormous amount of progress on myeloma and over the next few years, I know there will be more to come. The good news for yourself is that you are only 40 and your myeloma had been caught at a very early stage.

If anything like me, you will be in good hands under the NHS as I am being looked after by the Royal Derby Hospital. I cannot fault the treatment I have been given and continue to be looked after by them.

Anyway, take care of yourself and think positive as much as you can, as this really helped and continues to help me.

Kind regards,
Robert

[mariposaParticipant]

Hi. I was diagnosed with Mgus last October followinga bone marrow biopsy. It was a complete shock but now it’s pretty much faded into the background. I had a haematology appointment which showed my paraproteins were 9 which is low.
I’m also undergoing tests for high blood pressure and Parkinsons. I feel fine so it’s difficult to accept that I have problems.
I’m much older than you, but you’re in safe hands. I won’t say don’t worry because we all do. I wish you all the best. Take care x

[mulberryParticipant]

It’s always terrifying when we get diagnosed with a haematological disease. None of us expect to face this personally, it shakes us to the core.
No one can live with the level of total preoccupation that goes with new diagnosis. Eventually you will realise that you haven’t thought of MGUS/Smoldering myeloma/ myeloma for a little while, these times will increase in length and frequency.
In time the new reality gets assimilated into our lives and becomes just another facet of who we are.

The CT scan won’t hurt you, the bone marrow biopsy will, but this can be minimised if time is given for the anaesthetic to take effect. If you are worried that the doctor hasn’t given a few minutes, you can ask for gas and air which really has helped me.

The bone marrow biopsy results will be of fundamental importance, giving baseline information about the level of infiltration of myeloma cells, information about the type of myeloma cells present and about which proteins are present. Hopefully you won’t ever require treatment, but if you ever do, it will be helpful to your then consultants to know what changes were present now.

If you have got to have one of these plasma cell conditions, it is by far best to have it diagnosed before any organ damage is done. There is then the real possibility of preventing that damage from occurring.
In Iceland all people over the age of 40 have been asked to have blood tests to check for MGUS, they will then be followed over years to find out how many develop Smoldering or full myeloma. A very significant proportion of the Icelandic population are taking part in this study (called ISTOPMM). Already it has shown that MGUS is more common than had been appreciated, suggesting that previous estimates of MGUS progression have been overestimated.

I hope you get good news after your tests.
Jane

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