[docmikeParticipant]

Dear Smoulderers .

We all have two contrasting thoughts.Fistly we hope we will smoulder forever and never require treatment .But secondly if we do require treatment we would wish to be treated at an early stage before organ damage ( ahead of the curve…. medspeak)occurs but when progession is 90%+inevitable ( nothing is ever 100% in medicine I am afraid ) .The International Myeloma Working group has published an updated crteria which addresses the latter issue in Lancet Oncology online ,Lancet Oncol 2104 ;15;e538-48.
The new criteria which require treatment are

EITHER

Bone marrow plasma cells >60%+,
A serum free light chain ratio of >100 (affected light chain /unaffected light chain )
>1 Focal lesion (>5mm) on mri (preferably whole body mri which may not available in uk except in nottingham in the future?)

other imaging modalities may have a role to play and the appropriate redefintion of renal impairment has ben addressed . This article is the watershed in how smouldring myeloma will be managed ‘
Mike A
ps I have suggested to the webteam that there is a separate thread for smoulderers on the forum to prevent repetition and reflect our specific interim state !

[cartdawParticipant]

Hi Michael it’s dawn I received ur message thank u .   Ur  post is interesting my plasma cells from the biopsy were 70% so  does this mean I may be offered treatment in light of this  new criteria .

[alicenorthParticipant]

My understanding from talking to one of the myeloma UK nurses today is that although the IMWG is highly respected in the UK, the new guidelines are unlikely to come into practice with immediate effect. More likely, they will filter through over the next year or so. For this reason, there is no reference to the new guidelines in the news section of this website as it was apparently felt that it would cause some confusion to do so. However, this stance may change.

[docmikeParticipant]

I think Alice reflects what is likely to happen in the short term but if you have any of those criteria you may wish to have more regular checks which might include an mri or other imaging tests.
There is a trial on going; assessing lenolidamide by itself in the above situation(in the US needless to say,) the outcome of which is again likely to be critical in moving this issue forward although whether Nice will approve lenolidamide as frontline therapy in the uk ???
Mike

[kpParticipant]

I have to agree I would wish to smoulder forever, but don’t want to wait for treatment until there are signs/symptoms organ damage.

I have found the article online but will take a couple of read through’s to grasp the key concepts so thanks to Mike for the helpful précis of updated criteria.

I wonder what my Consultant will make of this and whether it will impact upon his decision making in my case. Seeing him for monitoring in a few days so will take a copy of the article. No harm in asking the questions I suppose. Up to a year seems a long time to wait for changes that could improve outcomes to be implemented.

Best wishes to all

Karen

 

[docmikeParticipant]

Hi all ,
Ive just been stateside(internetwise) on the myeloma beacon and Dr Rajkumar (mayo clinic , number 1 myeloma expert in the world in my opinion)states that the above criteria apply ONLY to patients at initial presentation .So if you have had smouldering myeloma for over two years these criteria may not apply .Which is as I expected; that there is very little or no hard data on predicting outcome in a smoulderer s after 2 years .Confused ? so am I .
Mike

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