[trankaParticipant]

Hi everyone my mum is 74 started cyclophosate thaliamide and Dec steroids and slow realese pain release patches I'm carer for her and I'm scared don't know how to ask her things as I don't want to upset her I've read up but there's a lot to take in does anybody know if she has smouldering myeloma or any info kind regards Tracey

[PerkymiteParticipant]

Hi Tracey, Sorry you have had to join our site, but you will find we are a friendly helpful bunch. 😀

This is an excellent site and there is bags of information on it. Plus there is a resident MyelomaUK nurse that you can ring, for free, and talk too. At this stage I think you would be well advised to contact her first. The free phone number is 0800 980 3332. You will find she is very helpful and approachable.

Kindest regards – vasbyte

David

[VickiParticipant]

Tracey

I can so understand your position. My partner Colin was diagnosed in 2011 age 56. I didn't want to show I was scared but was very very, for him and me :-/. I did keep asking lots of questions, but overtime learnt to do it in subtle ways rather than being like the Spanish Inquisition!

As David said this site is excellent so read up on the leaflets and speak to mm nurse Ellen, she is great….they all are!. Also did your consultant say if it was smouldering or the full whammy? I would suggest you ask lots of questions of them too?

Best wishes for your mums treatment, and use this forum to ask questions and vent worries…..it's such a help

Vicki and Colin x

[trankaParticipant]

Thankyou both it helps to be honest I'm not sure on diagnose if it's smouldering I think she's trying to protect us all I'm scared to ask her she has appointment 2 Weeks but my brother goes with her so I'm clueless as to the stage best wishes Traceyxx

[teds31Participant]

Hi Tracey, I have smouldering MM and have had it now for about 6 years, I don't have any treatment at all, I go to Leeds and they are very good at answering all your questions. Perhaps you could get together with your brother and put some questions for your brother to ask next there is a leaflet on this site regarding smouldering MM you can print it off for reference. Ted

[trankaParticipant]

Thankyou yes I will check them out kind regards Tracey x
You don't have any treatment that's good news I think to be honest your right my brother I'd good at as king questions I was hoping it was smouldering to be honest but the treatment she's on I guess it's a lot different in reality denial comes to mind glad you replied thankful l x

[trankaParticipant]

Thankyou good advice it's good to talk to people who understand what's going on in my head your right I will learn subtley as I get nervous to ask kind regards Vicki x

[trankaParticipant]

Thankyou perkymike your pik looks nice too cheerfull x your replies mean a lot to me and my husband x

[mhnevillParticipant]

Hi Tracey

Sorry to have to welcome you on here.

As your Mum is already on CDT I think it is unlikely she has smouldering MM as this usually doesn't attract any treatment, but don't despair. After six lots of CDT I am in complete remission.

Ask any questions and keep in touch.

Love to all the family.

Mavis

[trankaParticipant]

Thanks mavis I think I was just hoping but that's fantastic news fingers crossed for mum x love to you too

[Author]

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