Hi Nicola and Dad ?

Welcome to you Both, and it will get better I was on CTD in 2009 then SCT dec 09 now am drug free and doing Good, I want be as fit and as well as i was Prior to getting MM but its good enough for the moment (I am now 57 years young) still working and blessed that my company have gave me a light duty job and am still on it…[Read more]

Hi Pat
had a consultant app yesterday wore my purple jeans and a pale lilac fleece
very fetching:-P My bones were not effected but I had renal failure so if its not one thing its another:-(
Love Jo x

Hello Pat

I am 65 and refuse to grow old gracefully I wear purple and bright pink and I dont think a colour rinse comes amiss now and again dont think much differently from when i was 40 only on the days when i had DEX which turned me into a tyrant not on any treatment at the moment things do get a bit better 😉 I had CDT not VCD bit the same…[Read more]

Hi Pat,

I am so glad to hear that things are going so well. My husband Phil is also using a pill organiser to keep track of things, it is amazing how easy it is to forget if you have taken everything, especially when there are so many to keep track of!:-) Phil has also been surprised by the relative lack of side effects – long may it continue…[Read more]

Emma,
welcome
I am sorry however that at the age of 28 you joined under such circumstances .You have clearly tackled the adversity head on with your blog and are under the care of a very good clinical team .But despite this support, this forum should provide you with the extra help from people who know exactly what you are thinking and…[Read more]

hi ian
It is very confusing and asymptomtic myeloma could represnt either smoulderimg(multiple) myeloma(SMM) or the early phase of multiple myeloma without symptoms even though tests would show [u]signs[/u] that confirm that diagnosis ; In particular silent bone(B) lesions. Renal failure (R), Hypercalceamia(C) and anaemia(A) usually produce…[Read more]

Hi Emma!

28 is very young to get this. I was 37 when diagnosed, but I'm luckily still smouldering only. I joined the under 50s group so that I could get additional advice and support from others who have young kids. If you want to join us, please email Scotty s.hawkes@added-value.com We have a few other bloggers there.

Bella

SMM = smouldering multiple myeloma

Basically it is all in stages strting with MGUS, then SMM and finally MM; however only some get diagnosed early at MGUS or SMM stage.

Asymptomatic multiple myeloma is a bad term as it could mean SMM (lower levels compared to MM and no symptoms), or it could mean that the patient has levels normally seen…[Read more]

Hi Jean,
Very interesting and posibly a correct theory but i have not seen any publications on this to confirm ; but may go back to review
All smolderers are always on the lookout for preventative treatment !!!
As it happens, I have osteopenia and was refered specifically to a national bone centre who use zometa, but there was no…[Read more]

Hi Mike

My husband was diagnosed with SMM in Sept 2006. Straight away consultant started him on Zometa once a month for 2 years. She then stopped it. Years later I asked her if Frank would go back on it and she said that as he was still smouldering he would not have it as thinking had changed about giving it to SMM patients. He is now back on…[Read more]

dear beemer ,
zometa is used either for myeloma bone disease and/or osteoporosis (see information on this Site) but not for asymptomatic /smoldering myeloma afaik.However it has been shown to improve outcome in mm over and above its bone healing action So it is not a bad thing to be on ?prophylactically .But Im not sure about the calcium…[Read more]

dear beemer ,
Are you on a new clinical trial for treatment of myeloma?
mike

hi jane
The validity of the special bmb tests is they may predict high risk of progression in smm( ?need for early Tx)(see terryls post)and high risk features in active mm which may require specific tx (eg velcade can overcome high risk featureS)
But I get the impression these tests are not generally available in the uk ..yet . but…[Read more]

Hi Ian
And a welcome from me, and Lurk and ask anything you feel you need to, pull up the chair and get comfy.

Tom "Onwards and Upwards"

hi beemer.
welcome
you can learn a lot from lurking and reading the previous messages on smouldering /asymptomatic myeloma. I assume you having zolendronic acid to treat pre existing osteoporosis?
mike

Aww Andy and Steph you two are Nawty telling us all how Hot it is and how cold the bears are 😀 Its been Persistant here in Sunny (thats a laugh) for a few days and no hope of a let up. Why oh Why dint we go with you Lol.

Have a great time and dont worry you will soon be home Lol

One Cold "Onwards and Upwards" Tom xx

Hi Mari

Well av done that stage also he he it aint good ? but trust me you can get a few laughs out of it when Steve is better, Pleased the rash is calmer (thats a bugger) Steve if like me will get to the stage where he wont care if he gets anyone to visit as he (I did) will sleep most of the time.

Tell Steve to try and eat a little bit as…[Read more]

Hi all

Am sure you jave no rush to be using it David Lol but the postcard bit those that cant attend could send a postcard that is stuck on and you can read it at the other sided (pearly Gate End) 😎

Now this rent thing I just might google that tonight 😛

Tom (not ready Yet) "Onwards and Upwards" x