[claireh78Participant]

Hi,

My name is Claire, my mum was diagnosed december 2009 & i am still so confused by it all. I came on here hoping to maybe understand a little better, didnt expect there to be so many people going through the same thing

Claire x

[mhnevillParticipant]

Hi Claire

I can understand you being confused about your Mum's diagnosis. The good thing is that two years later you are here rooting for her. It is a difficult disease to understand because everyone's path through it is so different.

You have come to the right site. Ask any questins and I'm sure someone will be able to help'

Best wishes to you and your Mum.

Mavis

[BADGERParticipant]

Hi Claire

It is all confusing but hopefully this site will help you ,your mum is doing well if she was diagnosed in 2009 give her our best wishes
Love Jo

[tomParticipant]

Hi Claire

Sorry to read about your Mum, but you have come to the right place for help/advice and just to shout out if its getting too much, great bunch on here8-)

I was told In Jan 2009 and am doing great 😀 for a 55 near 56 yoers young :-S

has your Mum had or on any treatment?

Give your Mum a hug from me

Tom "Onwards and Upwards" xx

[claireh78Participant]

Thanks everyone… its good to know that there is peple out there that do understand. Mum hasnt started any treatment at the mo, thats the bit i dont understand coz shes got to get worse before they treat her. She goes for bloods every 2 months and has changed 2 levels the last few times… but how do know what level is what??

Claire xx

[MinParticipant]

Hi Claire,
Its good that your mum has been diagnosed early, as many are not and the treatment for a late diagnosis is not pleasant. But in you mums case. It sounds like she has a smouldering kind, which means the professionals watch and wait.
There is no point in starting treatment if it is not yet necessary. Far more pleasant for you mum and presumably she is relatively symptom free. Other than being very tired and having lots of infections perhaps?
If this is not the case they will commence treatment before it starts to invade her bones etc. Perhaps she is getting some help to ensure she gets no bone damage as that is the thing that causes the most symptoms. IE Dreadful Pain.
Hope this helps and perhaps you could go with her and ask the nurses next time she attends for blood tests
Best wishes
Min

[jmsmythParticipant]

Hi Claire

Min has explained it spot on. My hubby was diagnosed 5 years ago with smouldering myeloma and the only treatment he has received is Zometa. That was right at beginning of Diagnoses. He sees his consultant every 2 months and is monitored very closely. He gets what he calls "power failures" and just goes to sleep. I think we are very lucky as we lead as normal a life as possible. I know it is scary but you are in the right place for help and support. My very best to you both.

Love Jean xx

[kaychappersParticipant]

Hi Claire
I was diagnosed in 2009 and only started treatment this year. It was a watch and wait for me too. I was monitored with blood checks and my consultant said that the treatment would make me more poorly than the disease at that stage. They can tell so much from blood tests and intervene before you get, as the others have said, the bone pain or other symptoms. They started me on treatment because I became anaemic. Hope your mum continues with just blood tests for a long time, but also ask questions when you go to the hospital for peace of mind. Kay x

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