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 symptoms .In smo(u)ldering myeloma the 4 signs(crab) are absent and serial tests in the short term (over a few weeks)show no evidenc of progression .
Mike
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 recomendation for treatment in my case for either of my conditions .
mike
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 supplements in view of risk of hypercalceamia later in mm and concern about heart attacks on calcium ?? unless you have a low calcium?
Might be worth checking exactly why you are on these medications when you go for your infusion .
mike
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 hopefully will become so .Free light chains assays are often rationed by costs but might the best predictor of progression in smm
Can i safely assume that you already have had a mri ? I personally feel a mri of the vertebral column is essential in the initial work up of smm. There are plenty of people wih active MM on this forum who presented out of the blue with a spinal fracture which can have devastating and sometimes permanent neurological consequences.
best wishes mike
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
hi sarah jane,
Welcome.
I have had smm for 4 years ,having been told I originally required treatment only to have a MRI which confirmed the absence of bone lesions . I have written extensively on smm on this forum as I also happen to be a (virtually retired) doctor.
I note terryls reply but his experience is based as in the usa and not all of his tests are easily available in the uk (nor is carfilzomab available as first line tx in the uk but thats another story about he rationing of tx by nice).The serum free light chain ratio and values [u]may[/u]be helpful in predicting progression is available but costly . But in your case, the mri is more relevant in the first instance and I hope it proves reassuring for you .
Assuming it does .it is back to the regular blood tests . Two last points 1)do you always gets symptoms to confirm progression ;no
2) true bone pain is persistent and different from other aches and pains
I hope all goes well with the mri
best wishes Mike
Hi Eve ,
Thank you for the welcome .Ive come to terms with SMM especially after avoiding treatment for four years having been told CDT was imminent . Clearly I have researched SMM but have also kept abreast of relevant clinical trials ,an area which I have had expertise since 2005.
Clearly I have not been on treatment but I do know that there are three types of side effects .The theoretical/text book side effects , the side effects the doctor perceives and the side effects the patient actually experiences and the three are not the same ,unfortunately . It is learning about the latter which is the knowledge base of this forum together with how the experts manage these side effects because that is often the basis of their expertise.
The good news is ,in the last 4 years ,there are more agents potentialy available with the trend to greater efficiency and (reputedly) less side effects . Avoiding painful sensory neuropathy and reducing the dose of dexamethasone in regimes are desirable goals ( I had not appreciated the bad days on steroids until reading on this forum )The bad news is that the new drugs are only available in trials in the usa . So if I needed treatment tommorrow and everyting was available to me. I would plump for carfilzomib, lenalidomide(but palmalidomide may be better?)and low dose dexamethasone as the response rates are the best available .This is not going to happen in the uk for 5years ?
unless…
best wishes Mike
Hi Beverley,and all your respondents .
I am 64 and am a virtually retired Consultant Gastroenterologist and have had smouldering myeloma(SMM) since 2008 .I have been on this forum before but you seemed to have provoked a good discusion on SMM ,with some of your respondents highlighting diagnostic problems which reflect some of the questions that we all ask ourselves, as well as our doctors.
My story;In 2008 a routine blood test revealed a raised globulin which prompted further tests (22gm/L IGG kappa). After been told everything was ok, two days later when the immunfixation result came back ,I got a message to ring my gp"it was urgent "!!!
As I got a holiday booked i did not have a skeletal survey and bone marrow until two weeks later . The xray showed an old wedge fracture of T5 which indeed turned out to be such 4 years later and osteopenia of the spine .
The bone marrow was equivocal on routine staining of the aspirate and was sent to newcastle for a further opinion on the trephine sample ,; two weeks later the result came back and my heamotology colleague walked into my clinic ,told me to drop everything ;I had MM and needed treatment (I had expected such after the delay).
Next day i had a MRI which did not reveal any bone lesion therefore =?SMM. I was observed for 4 months ,after which I retired for a day and then returned part time . I remain well as I write this letter with stable bloods, negative urine and no change in the mri or dexascan .
But I have asked all the questions you will have thought of, but also reviewed the medical literature to see if I can get the answers and perhaps Ive challenged my haemotologist more than most .
Which brings me to doctors .For obvious reasons I have to be careful not to crictise individual doctors but doctors notoriously make bad patients .This is not only due having too much relevant knowledge but they begin to see the whole picture because they also (at last?)see the patients point of view!! .This a lesson I learnt 7 years ago ,when after a needlestick I contracted hepatitis c and joined two hepC patients forums and found myself unable defend the indefensible with the two main problems being doctors not listening and "fobbing off" the patients and doctors not realising/admitting their errors in thinking as a consequence of this action.(The hepC patients taught me a lot) Just for the record I am sure I have also been guilty of this .
But I do see SMM from the patients point of view .
However, I can admit I had never heard of smouldering myeloma in 2008 but did know a little about monoclonal gammopathy MGUS .Even then I had not realised that MGUS effects 3% of people in their fifties ,5% in their 70s but I have not found figures on the incidence of SMM nor indeed how many people with MGUS change into SMM. About 90+% of people with active MM had prexisting MGUS many years before . I happen to know i did not have MGUS in 2005 !
Most information on SMM comes from the usa, particularly the mayo clinic as they have a large enough cohort of such patients to provide more reliable clinical statistical evidence . Im not sure whether there are such cohorts studied in the uk but regional myeloma mdts will pool their experience rather than individual clinicians.
The first question ;What are my chances of developing MM ?
An average accumulative risk of 10% per year for the first 5 years ( yes this is most my risky year that approaches), then 3% per year for the next 5 years and then down to 1% per year after (?less risk than MGUS???).
What are the higher risk factors which have been used to define low ,intermediate and high risk groups by their presence or absence ?
a) percentage of plasma cells in the bone marrow and in particular the percentage of abnormal plasma cells
b) M spike >30gm/l
c)An ever changing Free light chain ratio( <0.125 or >8)
d) some chromosomal /dna changes in th abnormal plasma cells
e) whether other immunolglobulin are reduced (immunoparesis )
Can treatment be given to prevent M M/
Generally speaking it has been thought that the risks of side effects of treatment outweigh the potential benefits of treatment in SMM until the Quiredex study from spain which showed some benefit from lenalidomide/dexamethasone in the high risk SMM. So watch this space for results of further trials elswwhere which with further favourable rersults could in turn lead to a trial in uk?
What symptom ,sign and/or test/s confirms progression towards MM? Is the measurement of the M spike every three months a 100 % fool proof ?
Anecdotally I have a friend with MGUS who developed pain in his hip who was reassured by initially unchanged M protein only to find that a later MRI confirmed MM by which the m protein had risen but i think was still below 30.
A retrospective study in the usa involving the people who had mgus before MM, a progressive change in the free light chain ratio preceeded the devlopment of MM and well before the rise of the M protein .But the FLC ratio is expensive to perform not funded routinely in many uk hospitals .
A mri or pet scan is superior to skeletal survey . The pet scan is expensive and jealously guarded by the radiologist but this was the case when ct and the mri first came on the scene . I suspect that even with a high false positive rate, it is the best test. But tweaking the mri scan can also show bone marrow activity .
A mri of spine on yearly basis seems the best way to detect disease hopefully before potential damage to the spinal cord or the fracture of the spine which can lead to the need for permanent pain relief.
Bone pain ,rib pain in the absence of trauma and anaemia seem to be the commonest symptoms but other manifestation cam herald MM.
Hopefully new markers of progression will appear to help define who requires treatment which could be reliably given as early as posible which only be good thing rather than waiting for bone problems
.
Which treatment should be given first is the ongoing big question but Nice witholds the newer treatments for relapsed patients only . So aceess to newer therapies which seem more effective, usually means entering an organised trial and hoping you recieve the newer agent. The good news is that there does seem a lot more new agents on the horizon even in the short time ive been on this forum ;getting access to them may be a problem
but that is better than having just a limited range of options.
So hopefully Ive answered your qustions that I anticipate that would cross your mind and helped others who have added to this discussion. It is purely my personal perspective and is hopefully informative (ie reading between the lines type approach.) There may be information you would rather not be aware of but I ve also had deal with that too;though it has been easier once I knew I did not require treatment straight away, I still know Ive got about 20% chance of avoiding MM.
Best Wishes Mike
