[scottParticipant]

Hi all,

I'm Scott a 42 yr old asymptomatic myeloma grumbler…….

Diagnosed in the summer of 2010, I've been through all sorts of emotions and am finally getting my head in to gear again. I've posted a few times on the Myeloma Beacon forum, and feel a little more at home on a UK forum.

I read and read and read again on the Internet all of the possibilities and after I had finished scaring myself I decided to follow some of the advice out there suggesting ways to hold on to the smouldering stage. I read Margaret's Blog now and then and took the Cucurmin treatment onboard. It seemed to work initially, bringing up levels of haemoglobin, and now they have dropped off again.

There's lots more to say, but for now, it's just hi everyone.

By the way, Debs, if you read this post, are you hopefulmum from myeloma beacon?

Scott.

[BellaRSParticipant]

hi and welcome!

I'm also asymptomatic/smouldering (though at first they labelled me MGUS). I did consider curcumin, but the thought of that many pills extra was a bit much – I've got RA too and there are plenty of pills a day for that. Though at the moment my pp has dropped significantly and I think it is because of Humira (anti-TNF drug against RA). So I'm very pleased!

Come and say hello to the under 50's group here and we also have another webforum (Scotty can send you an invite if you wish to join – note that the by invitation only is not to keep people out but to keep the "expressive" language many of us use in… 🙂

Bella

[DebsParticipant]

Hi Scott,

Welcome to the UK website….and yes I was down as hopefulmum…..don't like the title now (though of course I am hopeful!!) but I signed on as that when I was pretty depressed about my diagnosis and when all I'd read was the american titles!

A bit more upbeat now, despite having just started on CRD (via the Myeloma XI trial). Luckily finding the treatment so far pretty side effect free so that's good for anyone else who finds themselves in the same position.

Anyway, hope you stay smouldering for a long time yet Scott!
Debs (hopeful as ever!)

[michelleakitt29Participant]

Hi Scott and welcome, its my mum that has myeloma, but it is I who uses this site for advise and friendship.

As Debs says, hope you stay smouldering for a long time coming.

with love michelle x

[jmsmythParticipant]

Hi Scott and welcome
My husband was diagnosed with Smouldering Myeloma on September 2006. His blood tests have been stable (or within range!!) Thank God he has not started treatment yet. This site has been a God send to me. If you have problems or any queries, someone on the site will be able to help you.

All the best
Jean

[KWilsonParticipant]

Well you're in a good place here. Lots of support and humour. Up to date and information you can trust on the leaflets and advice and the nurses on here are brill too.

Good luck on your journey.

xxxxxxx

[brochoParticipant]

Hi Scott welcome to the crazy gang !!Sorry being flippant but you will find lots of support here from smoulderers and those of us who have mm Look forward to reading your posts Bridget

[scottParticipant]

Thankyou all for the welcome, I'm still reading lots lol and if anyone wants a few myeloma journals to read, just drop me a line 🙂

I had a shock last week at my latest appointment, haemoglobin 11.6, IgA up to 30.9 from 24.0 in a month. Whoops…here we go I thought.

The consultant wanted to start me on treatment and I said no – have you ever been in a conversation that is so charged you really don't know what will happen next – it was one of those. Bottom line is that I don't feel ready and as many people have more extreme results, I am waiting and having a good chat with my curcumin bottle!

The front line treatment is CTD as yours is Debs, I think it is the UK standard now. I will be reading your experience with interest as I think I will be going that route sooner or later.

Best wishes to you all

Scott.

[DebsParticipant]

Hi Scott,

Interesting to hear about your figures, though obviously I'm sorry to hear they've progressed a bit. But if it helps, I had a couple of blips like that and then things went back to normal again, before I started to show a steady deterioration in figures. So it's definitely worth watching for a month or so before you make any bg decisions.

I'm on CRD (revlimid instead of thalidomide) as part of the Myeloma XI trial and it sounds like it's a regime that shows fewer side effects. Apart from a feverish blip the other day, I've managed pretty well for the first 7 days anyway (yes I know it's still early!). It sounds like you're in the same sort of position as I was in which case, you'd be the perfect 'candidate' for the trial, so it's definitely worth getting some info from your consultant about it all. Whereabouts are you being treated? I'm not sure all hospitals are involved, but it might even be worth thinking about changing to get a better option?

In case you want to read more about it, here's my blog (you can see what I really think!!) which has a link to further info about the trial….might be helpful but don't worry if you don't want to read it….I think it's very boring but it's a useful diary for me!! http://debsjourneywithmyeloma.blogspot.com/

Take care and please give me a shout if you want to talk things through, either via here, via my blog or I'm on fb too??!!

All the best and hope you can keep those proteins in their place!
xx

[kaychappersParticipant]

Hi Scott
I just wanted to say hello too. I started as a smoulderer in April 2009. My para proteins started at 30 then fluctuated between 25 and 29 until September this year, when they suddenly went up to 32 and my haemaglobin went from 12 to 10. They have decided to start treatment in the new year and hopefully I will be on the Myeloma XI trial. I have no other symptoms other than extreme tiredness, but that has got steadily worse over the last few months. I came on this site a couple of weeks ago and I have found everyone extremely supportive and friendly. I hope that you keep smouldering for a long long time.

All the best Kay x

[KWilsonParticipant]

Welcome. You'll find this a wonderful resource of up to date, accurate and helpful information and also a very supportive discussion group.

Good luck with your treatment.

xxxxxxx

[kaychappersParticipant]

Thank you.

xx

[zasrsParticipant]

Hi scott

A warm welcome to the site everyone would rather not know about but is such a help, I have no advice every mm seems to be so different! I do find the American sites scary so dont bother with them.

Sarah

[mhnevillParticipant]

Hi Scott

Welcome to this site. I'm a relatively newcome too but have found it really helpful.

I'm aleays interested in anyone else, who like me, isn't keen to rush into chemo. I went to Consultant this week. PP level 7. She says I'm aneamic and might need a blood transfusion. Evidently, radiotherepy, which I've just finished, can further deplete blood count and contribute to tiredness. I thought it was so much travelling in very uncomfortable ambulances!!!! I await her phon call. Apart from that, she is happy to let me "wait and see".

How do you take the curicumin (I realise I haven't got the name right, but will losse this if I switch back!)

A general question for anyone: "why would it be better to be in a Trial that to "wait and see"?

All best wishes to you.

Mavis

[Author]

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