[kaychappersParticipant]

Hi there
I am a newcomer. I am 46 and was diagnosed with smouldering myeloma 18 months ago. I have gradually been getting more anaemic and was told I have to start treatment in January. I extremely scared and also I am in denial that I have the illness. It was a routine blood test. I must admit I can now sleep for England and will be glad to get my energy back, but I have a long road to go down and I found this sight, which already has helped me a great deal just by reading your stories, positiveness and support you give each other. Any reassurance would be lovely. Kay

[kaychappersParticipant]

Hi Tom

Hope you do not mind me emailing, but I am new to this site and not quite sure how to get on. I am starting treatment in January and was surprised to have the illness as it was a routine blood test. I am 46. Any advice or help I could get would be great. Kay

[tomParticipant]

Hi Kay

Sorry you have to join this group 🙁

BUT its a great Group 😀 for us that have to join.

No probs Re you Emailing, and as for advice and help plenty on here its a new site so we are all in the learning curve so to speak.

Not sure what advice/help you need at the moment, what treatment are you on? do you know what is planned for later? so many things to know so many things to add.

With not knowing at the moment what stage/condition you are in the only thing I can say so far is "One Day At A Time" Every one is different with this Bloomin MM so what happens with one will not necessary happen to you.#

Kay am so sorry it seems abit blank my reply :-S but at the moment its all I can add.

Tom xx

[ElizellenParticipant]

Hi Kay!!

I am sorry that you are eligible to post on our forum, but wanted to say 'Welcome' to you!!

I am not exactly sure what 'smouldering myeloma' is as compared to what I have, but I am sure that your medical team will be doing all they can to help treat it in the best way possible.

I was diagnosed with myeloma early this year and so far have had lots of pills then a stem cell transplant in August/September and tomorrow will be told how the procedure went (my '100 day' appointment).

If there are any specific questions you have – just ask and I am sure someone in our MM family will have some knowledge or advice for you, or just some encouragement to help you cope.

As well as this board there is a special group for the under 50's which you can join by posting in the Under 50's forum lower down the page.

Wishing you all the best in your continuing treatment

Elizabeth
XX
X

[kaychappersParticipant]

Hi Elizabeth thank you so much for coming back to me. I start treatment in February 6 months then stem cell transplant. I truly hope that all goes well for you tomorrow. Kay

[michelleakitt29Participant]

Hi Kay

Hello and welcome to this site, not one that anyone wants to join tho!! My Mum has MM diagnosed july 09, She is not able to have SCT so can not help you with that one, but wanted to wish you luck and hope all goes well, keep us updated with your progress.

with love michelle x x

[DebsParticipant]

Hi Kay,
Sorry to hear that you've joined all of us on here, but happy that you found us as it's a great site and you'll get loads of support.

I am 36 and was diagnosed, like you, by a random blood test, in July 09. Also like you, my hb kept dropping low while my paraprotein kept rising. Over the summer, the topic of treatment started to arise, and eventually I started on the Myeloma XI trial, 3 weeks ago, with the idea of 4 cycles of CRD (revlimid rather than thalidomide) and then possibly velcade (if I don't respond well) and then a SCT.

Try not to be too scared. I don't know if the revlimid has made the difference, but I have had really limited side effects on it….not even the Dex that everyone talks about! Where are you being treated? It might be worth asking about the trial and seeing if you can get on it? But even with CTD, I understand that for lots of people, you can carry on as normal. I am still working, still doing the everything for my 4 and 6 year old, and still running round manically for Christmas!!! I do get more tired sometimes, and have a horrid taste, but other than that….

Definitely join us on the Under 50 site too….so long as you don't mind slghtly ripe language! But most of us visit both sites so you'll find us anyway.

And if you want to talk things through with me, drop me a message….really happy to talk off the forum if you would prefer that.

Take care
Debs

[GillParticipant]

Hi Kay

Welcome to the site that is very elite, very supportive, very friendly and helpful and a place where everybody wishes they did not have to be.

Very good luck with your treatment let us all know how you are getting on.

Kind regards Gill

[kaychappersParticipant]

Hi Debs and thanks so much for your reply. They are trying to get me on the Myeloma XI but will not know until the 1st Feb when I am due to begin then I will be having stem cell transplant 6 months later. Your comments have made me feel a lot better already. I will keep in touch.

Kay

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