[docmikeParticipant]

Dear Jane and Chrissie .Thank you for you support.
davefletchers thread on yvonnes topic is worth a look .
Mike

[docmikeParticipant]

Dear Dave
Thank you very very much for your imformation.I have had a negative mri but positive pet scan which I can now regard as a genuine first myeloma bone lesion and not a false positive .There are few references in the literature comparing mri and pet scan in myeloma (usually comparisons with skeletal xray survey .There are proposals to develop combined pet/mri scans.
It seems likely that despite false positves with the pet scan, it can detect both myeloma outside bone and plasma cell infiltration in bone in which there is not structural changes which would have beeen expected to be seen on ct or mri and hence also may not cause pain ,as in my case. The true incidence of painless lesions in myeloma is unknown unless both type of scans were done on regular surveillance basis .If pain is present both scans are required there and then .This is not established practice yet because of the absence of supportive evidence in the literature and the assumption that monitoring blood tests .M spike and FLCs are the gold standard .
Mike

[docmikeParticipant]

Woops bone marrow 60% plasma cells !! pet scan uptake on T11 (thoracic spine ) not seen on mri , hb down again to 11.5/115 (11.1/111 = 2gm /20dm drop =anemia =active myeloma )
on the edge of the cliff
appointment on thursday to discuss options
Mike

[docmikeParticipant]

Hi kath,
ERRor BMB plasma cells 1% (?0.77%) not 77%
Just read you r other thread on newcomers !!
Apologies Mike

[docmikeParticipant]

Hi Karen,
Sorry to hear your news but you seem to have accepted your fate and indeed got on a good regime(?outside a trial ?).
I am just about to have BMB today and pet scan tommorrow ;so I think I am not far from treatment.
pProtein 38 hb 11.9
see smouldering forum
Regards Mike

[docmikeParticipant]

Hi Kath and Yvonne
Just to confirm the papaprotein levels can fluctuate a bit by one or two each visit ;but a sequential rise at each vist is more significant and this best assessed by more frequent and shorter interval testing (4 or2 weeks).
I know this from personal experiance over the last 10 months and am having a bm today and pet scan tommorrow .(mri SPINE,half skeletal survey ok recently )
Kath ,Your BMB result does puts you at higher risk Im afraid but not everyone with high risk progresses.
Best wishes Mike

[docmikeParticipant]

Hi Dawn.
I am still in limbo; M spike leveled off at 37. hb 11.9 but mri spine and limited skeletal survey no lytic lesions .Am awaiting bone marrow on 23/2 and pet scan 24/2
The skeletal survey in sheffield did not include long bones which is contrary to the guidelines of 2011 British Haemotology society.The pet scan broke yesterday and hence the delay .(2008 skeletal survey in chesterfield did include long bones )Best wishes Mike

[docmikeParticipant]

Thanks for yor best wishes .I am awaiting a mri : my alk phos has fallen being compatible with a recent silent micro fracture somewhere.
Dear Chrissie . The stats shows that 10% of high risk smoulderers patients Do NOT progress within ten years and are then regarded has having MGUS with a risk of 2% per year .
I have not found any details of studies of these long term smoulderers as I dont think there are any
Mike

[docmikeParticipant]

dear angelina,
Iv seen one criteria for smouldering in which one lytic lesion is “allowed” ;but 2 lesions=active mm
Within an mri there are 2 techniques( T1 and T2) that can be used such that the mri for ms shows the nervous tissue best but NOT the bones ;the alternative method is best in detecting myeloma of the spine (whole body mri is not available in uk yet .
You are the patient and have right to be concerned ,especially if you see a different doctor each visit . the free light chains seem high for mgus also.For further reassurance remember I am a doctor who happens to be a patient and who knows exactly what your concerns are ……
Mike

[docmikeParticipant]

Thank you very much; It should prevent repetition in giving inmformation to new smoulderers as all the relevant details will be on the one forum /thread
Mike

[docmikeParticipant]

Dear Karen,
I may have misunderstod your consultants views or your interpratation but having monitored the internet for the past 6 years on myeloma I have to disagree; reality (in the uk at least ) is way behind the information about progress in myeloma available on the internet.If I needed treatment soon there is fifty percent chance it would be the same treatment I would have been offered 6 years ago ,despite 3 or 4 new therapies that have been developed in that time which are available in the usa .Information empowers patients and quiet rightly so ;and yes I am doctor who is saying this because I realise that if you know where and how to look on the net it is possible to learn as much theoretical knowledge as your doctor. eg There are free videos of major presentations at important Heamotology conferences (ASH) which can put you right at the cutting edge .
Mike

[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

[docmikeParticipant]

Dear Chrissie,
Yes your cells will mutate but the next dominant clone that takes over may not be as clinically agrressive /significant presumably by suprressing the bad clones .We are all here because of mutations millions of years ago .
Mike

[docmikeParticipant]

DEAR MARTIN ,
This is the thread which may resolve your concern about about 80% risk which has now become 90% risk according to the experts who indeed have access to the best retrospective patient data to make that guideline

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 !

October 28, 2014 at 12:31 pm

mike

• This reply was modified 9 years, 11 months ago by  docmike.

[docmikeParticipant]

Dear Chrissie,
Like Helen ,your question highlights the complexity of myeloma and the gaps in our knowledge in predicting the outcome in smoulderers(SMM)
The largest study on SMM was published in 2007 and this is still regarded as a sentinel reference and was published on both sides of the atlantic . The retrospective study was conducted at the Mayo clinic ,involved 276 patients with smm followed up from 1970 to 1995.Yes it took 25 years to accumulate enough patients in a highly specialised cantre and that long to discern the pattern of outcomes.The risk of progression overall was 10 % per year for first five years ,3% per year for the next 5 years and 1% per year the next ten years (MGUS like risk)
(3% patients under 40 )
As far as I am aware there has never been a uk study of this scale so UK haemotologists may depend on their own (anecdotal) experience according how many patients with smm they have observed and their outcome which may not be representative .
More recent studies (non from uk)have tended to concentrate on defining the criteria to
ascertain the parameters which determine progression with more certainty altho I think the latest quotes 80% risk in two years ;100% certainty not yet predictable .
In the 2007 study 13% of the highest risk group did not progress after 15 years of follow up why?????
We need a study in the uk to audit the outcome in smm but it may only help patients in your position in 20 years time .
lots to think about !!! so lets stop there
Mike

• This reply was modified 9 years, 11 months ago by  docmike.

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